Sudden Sensorineural Hearing Loss
For those of you that may not have known, I experienced a severe loss of hearing overnight last Thursday… (continued after jump)
In the late evening I noticed a slight ringing in my right ear, which became a loud distracting ringing accompanied by some hearing loss by bed time. When I woke Friday morning, the ringing was “over-amped” to the point it felt (rather than sounded) like ringing, and I couldn’t hear much but loud reverberations anytime there was a high pitched noise like the beep of a vehicle backing up.
I did some searching on the internet and found a paper on something called Sudden Sensorineural Hearing Loss. Thinking this to be a match for what I had, I tried to get seen by a local ENT without much success. Laura’s primary care doctor would not give out the name of the ENT they refer to without me being seen, despite the fact that our insurance lets us consult with a specialist regardless of whether we’ve seen a primary care physician first. After some pushing, I got an appointment with Laura’s primary care physician at 10:45a Friday. After some harried phone calls with my mom (a nurse practitioner), I found out she had gotten in touch with the physician’s assistant at Johns Hopkins who is running a study on this particular condition. She made it clear I should be seen today. So with that in mind I started calling emergency rooms in the Richmond area, trying to find one with an ENT doctor on-call. I settled on VCU/MCV, thinking that because they did in fact have an ENT doctor on-call and it was a teaching hospital, I would get similar concern as Johns Hopkins was showing for the seriousness of my situation.
To make a long story short, I waited 90 minutes and saw an ER doctor who could not get the ENT doctor on-call to come down and examine me. The ER doctor examined my ear with an otoscope and spoke on the phone to the ENT doctor on-call for a few minutes, then prescribed me a short course of high-dose steroids, along with an anti-viral drug.
According to the physician’s assistant at Johns Hopkins, getting on the high dose steroids immediately turns out to be the most important factor in hearing recovery for the study they are performing. According to her I really should have had a full workup (bloodwork, MRI, hearing test) on Friday, but starting the steroids immediately and getting to the rest on Monday was the next best thing. So with that in mind, she scheduled appointments for me on Monday and Laura and I made plans to drive to Maryland, stay the night with my parents, and go in Monday for my diagnostics.
Monday morning at Johns Hopkins, I first had a hearing test. My left ear results came out very well. My word discrimination was 100%, with a “pure tone” average level of 11db. What this means is that the level at which I could hear tones at 1000hz, 2000hz, 4000hz, and 8000hz was averaged, and came out to a relatively quiet 11db for the left ear, which is functioning normally. In contrast, my right ear word discrimination was 72% with a pure tone average level of 45db. This was enough to be considered “moderate” hearing loss, but not enough to be eligible for the study Johns Hopkins is running.
After an ENT-neurological exam, some examination with an otoscope, and consultation with the physician at Johns Hopkins experienced with this condition, I was prescribed another 10 days of the high-dose steroids, as their study shows that to be the most important factor in regaining hearing. The physician indicated my prognosis was good, given that I’ve already seen some progress over how my hearing was on Friday morning, so I remain hopeful for a full recovery of my hearing.
While we were at the Johns Hopkins Outpatient Center, I also had blood drawn and an MRI. We decided that the wait-time on the MRI was probably going to prevent me from getting to the bloodwork before they closed, so while in line for the MRI we went down to get my blood drawn. I believe they filled 4 tubes, but they still needed to stick me twice - the first time they either didn’t get a vein, or it wasn’t producing. My veins tend to roll and be hard to get ahold of with a needle.
The MRI without contrast went smoothly, but not so smoothly when the time came to inject the medication for the contrast imaging. Again, my veins were hard to get ahold of, and I got stuck 4 times to get the injection, with a painful little side-trip of the medication injected into my skin instead of my vein. Let me tell you, your arm begins to ache in a hurry when that stuff goes in your skin!
The cool thing about the MRI is there was a very nice guy doing a lot of the work, and I asked him if I could have a copy of the results. He burned a CD for me to look at that includes a bunch of data files and a Windows-based program for viewing and compositing into 3D views. I will try to export some screenshots in the near future in case anyone is interested.
Looking forward, I’m very hopeful I get my hearing back to what it was prior. Having the moderate amount of loss I do is disconcerting. I’m sure I will adapt and be able to better understand speech, but high-frequency noises (in most music, as an example) make my right ear feel like someone is ringing a very loud bell right next to it. It’s extremely distracting and will probably prevent me from enjoying audio/multimedia, which would be a big disappointment. For now, I’m not going to focus on that, but instead just keep my fingers crossed and think positively!
I’ll be following up with another hearing test and examination by the physician at Johns Hopkins in two weeks.
More then…
April 12th, 2006 at 8:11 pm
What a scary experience! Hats off to fast thinking, using your resources, and not letting the craziness of the medical system get in your way. I hope the steroids do the trick – quickly and without further needles.
April 12th, 2006 at 10:04 pm
Thanks. A lot of the legwork was my mom. She was and continues to be incredibly helpful and supportive through this. It’s amazing the amount of help she can bring to the table with medical topics – I’m really grateful she was able to talk to people at Johns Hopkins and go in with me on Monday.
April 14th, 2006 at 4:57 am
Good grief! Do they know what causes it? Sounds like something that should have a root cause. Did you get the blood teast and MRI results back yet? I have been having off and on ear aches for no apparent reason but no big hearing loss (just aging hearing loss).
Keep me posted. The blog format is interesting.
June 27th, 2006 at 5:58 am
Hi Matt,
I came across your story while searching the internet for more information on sudden hearing loss. I had just spent 5 days in the hospital to treat this….and seem to have recovered almost fully.
I am a 64-year-old female from Malaysia. I have been writing some details of my experience for my friends to read about, and to learn from my experience. I don’t know if you would be interested to share the experience!
From
Meng Eng Tan
October 23rd, 2006 at 1:15 pm
Hi Matt,
I stumbled across your blog searching for Mythfrontend for the Mac and enjoyed your writing. I’m glad to read in subsequent posts that you improved somewhat and hope that the residual loss is not terrible for you.
I’m a computer scientist who has been doing medical research for 15 years so I’m fascinated by the way the medical establishment works, ethics, and healthcare policy as well as my own research field (roughly: brain MRI).
I hope that at some point you take the time to write a short letter to the primary care physician whose office refused to give you the name of the ENT they refer to. Their behavior was completely unacceptable. As a pratical matter, physician’s offices will often attempt to enforce insurance companies’ gatekeeper policy simply because they’re the ones who often get yelled at by patients who get an unexpected bill. On the other hand, you’re an intelligent person and knew full well how your insurance works and they prevented you from getting the care that you needed. That’s not o.k. and I hope that you tell them so. The system as a whole shouldn’t be “dumbed down” to meet the needs of the least astute consumer.
Best regards,
Neil
December 3rd, 2006 at 2:54 pm
I came across your article after a panic search when I woke up Saturday morning with total hearing loss in my right ear and a visit to the Urgent Care did nothing to help. It ended up being my doctor (who has an ENT backgroud) that set me on the right path in 30 minutes. I had Otitis Media Effusion, common in children, less so in adults. My infection came on as a result of a form of herpes on the ear. A prescription of Valtrex, Biaxin and over-the-counter Sudafed, and within 3 hours I felt the infection draining out. My hearing isn’t completely back, but it’s well on the way.
Anyone who has any type of hearing loss, especially overnight, should seek help and never settle until someone gives them an answer. It’s a medical professionals oath and responsibility to help you, not dismiss your concerns. Kudos to you for actively pursuing answers.
December 3rd, 2006 at 2:54 pm
I came across your article after a panic search when I woke up Saturday morning with total hearing loss in my right ear and a visit to the Urgent Care did nothing to help. It ended up being my doctor (who has an ENT backgroud) that set me on the right path in 30 minutes. I had Otitis Media Effusion, common in children, less so in adults. My infection came on as a result of a form of herpes on the ear. A prescription of Valtrex, Biaxin and over-the-counter Sudafed, and within 3 hours I felt the infection draining out. My hearing isn’t completely back, but it’s well on the way.
Anyone who has any type of hearing loss, especially overnight, should seek help and never settle until someone gives them an answer. It’s a medical professionals oath and responsibility to help you, not dismiss your concerns. Kudos to you for actively pursuing answers.
December 31st, 2006 at 1:09 pm
I have suffered temporary hearing loss in my left ear on three occasions since late November 2006. The ear SUDDENLY feels full of water and all the high frequency sounds are lost. After about 6 to 10 hours hearing comes back. It has just happened again now at 6pm New Year’s Eve. Every time it happens I have been sitting at my computer (for a long time). Just wondered if the radiation from the computer can have anything to do with it. Any opinions, anyone?
Susan Ewens
Leeds
England
February 24th, 2007 at 10:07 am
Three days ago I lost all the hearing in my left ear within 3 hours. I went to my ENT the next day and had a hearing test which showed pretty much no hearing whatsoever in my left ear. She said that prognostically recovery is considered less likely when the ear has lost all function. She put my on antiviral medication and high dose steroids. I had an MRI which was negative. Right now I’m just hoping for a partial regain in my hearing. You had mentioned a study at Johns Hopkins Hospital. I’m not sure when your blog was written and if the study is still on going. I am writing this on 2/24/07. Do you know the doctor’s name or if the study is still on? Has your hearing fully recovered?
February 24th, 2007 at 1:54 pm
Hi, sorry to hear about your predicament. I have recovered some, but not all, of my hearing. The tinnitus I experience is often pronounced in the presence of high frequency noises. I have a very difficult time dealing with conversations in noisy areas where the din of background noise is high.
I am uncertain if the study is still ongoing at Johns Hopkins, but the doctor I saw there is John P. Carey - office phone is 410-955-7381. You will probably end up at a recording where you can leave a message for his receptionist or physician’s assistant. I mostly dealt with his physician’s assistant when setting up my initial appointments.
Good luck!
February 24th, 2007 at 6:42 pm
Thank you so much for your quick reply. I will call on Monday and see if the study is still ongoing. Even if it is, I’m not sure if I would qualify because my hearing loss was severe to profound. I would be happy with at least a partial return which would be better than what I have now. You are lucky that you regained some back. From what I’m reading everywhere the chances for me are not so good. This is still so new to me and I’m having a hard time adjusting to this. It’s not easy as you know. I was wondering about hearing aids, but I think they don’t work if the ear is completely dead. Were you able to get one?
February 24th, 2007 at 8:15 pm
I actually did not qualify for the study because my hearing loss was not substantial enough. Given the amount of hearing loss the first day, I probably would have qualified. After 3 days steroids, my recovery was enough to disqualify me.
Definitely give them a call. You might even leave a message tonight. In all my interactions with them they were imperative the correct course of action was to immediately get on the oral steroids and that this was to be treated as an emergency. From what I found online indicating the same thing, the Emergency Room in Richmond put me on steroids.
I have considered hearing aids. The most trying situations for me are around young kids that make lots of high pitched noise and when having conversations in noisy environments. I have not tried out a hearing aid yet, but I know they can be tuned specifically to the hearing loss and frequencies experienced as determined by hearing tests. It’s still something I am considering as an option.
I wish you luck in resolving your condition.
February 25th, 2007 at 9:21 am
Thank you again for the information. I will definitely call Johns Hopkins. I have been on the oral steroids for a few days now and have not noticed any change in my hearing. I’m having a very difficult time dealing with this. The thought of not regaining my hearing and having to live like this the rest of my life is something I am having a hard time accepting. I guess we all take our hearing for granted. I’m tyring to find some kind of online support group for this and maybe this will help me accept my condition if I don’t regain any hearing.
Good luck to you and thanks again for all your help.
April 13th, 2007 at 6:15 pm
It’s good to see other people talking about their experiences with SHL.
My experience was that I got a viral infection 8 days ago that gave me a very bad sore throat. On the 2nd day of being sick my symptoms were a sore throat and a slight fever so I went to my primary care provided who ran a throat culture to see if I had strep. He told me to call back on Monday to see what the results were.
Well on Sunday night/early Monday morning I woke up in a lot of pain in my throat and noticed that my ear was ringing and felt clogged up. I noticed that I couldn’t hear very well out of that ear. When the doctor’s office opened in the morning, I called them and told them of my condition and asked about the throat culture to which they replied it was negative. The doctor’s advice was to go ahead and get on a regime of antibiotics anyway and give it a day or 2 to see if that cleared things up. This was after I commnicated that I was having trouble hearing and had ringing in one ear.
After taking antibiotics for 2 days, my condition did not improve so I started looking for an ENT specialist. By Thursday morning I was finally able to get in to see an ENT who immediately diagnosed my condition as SHL after seeing the results of my hearing test in which I had a 40db drop in hearing in my left hear. He prescribed an antivirual and steroid which I’ve now been taking for a day.
My condition has not improved at all since Monday morning at this point (it’s now Friday). I’m mad at my PCP for not listening better to my worsened condition and then prescribing antibiotics to me when my throat culture came back negative. I’m mad at myself for not going to an ENT earlier when I had the symptoms on Monday. I thought that my clogged ringing ear was just a further symptom of my flu condition and that it would pass on its own. The ringing that I’m experiencing is very load and distractive. I am hopeful that it will not continue forever. The hearing loss is very noticeable and I am having to have people repeat what they say.
April 14th, 2007 at 8:47 pm
Hi friends. I am an italian university professor of Applied Maths and five years ago I had the same experience of SSHL. I like to underline some points.
1) It is fundamental to distinguish between Sudden Conductive HL and
Sudden Sensorineural HL. The cases of December 3rd and December
31st are SCHL (middle ear infections) and typically patients recover
completely or almost completely their hearing. The other cases are
SSHL (inner ear infections) and hence are much more dangerous since
the infection is associated to hair cells damage (often not reversible).
2) The amount of recover depends on the HL shown in the audiogram.
Low frequency or moderate losses have the best prognosis.
Steroids (prednisone or prednisolone) seem to work if the therapy
is started immediately.
3) In some cases (people over 45-50 years) the origin of SSHL is NOT
VIRAL but VASCULAR and has definitely a better outcome.
(this was my case).
4) I have studied the pathology deeply and I will be glad to answer your
questions
Good luck to all
April 21st, 2007 at 1:22 am
Just found out that I have SSHL and went to an ENT immediately. I too have started on steroid and Valtrex. Can anyone tell me how much Valtrex they are taking or took and also the steroids. Would like to compare my dosage. Thanks
April 24th, 2007 at 9:10 pm
Dear Amy, the medical experience suggests that an immediate treatment of a high dose of prednisone (60 mg taper) for 14 days is the best way to deal with SSHL when the origin is viral or the patient is young (age
April 25th, 2007 at 10:03 am
I also recently have found out I have SSHL. I had never even heard of this before. WE were on vacation in St. Kitts and I woke up one morning with my ears feeling “clogged”. At this point I could still hear. 3 days later we flew home and I noticed that when we landed I could not hear out of my right ear. The next morning I went to get up to go to work and I was suffering from exteme vertigo. I was so dizzy and sick to my stomach. I went to the emergency room and the doctor told me I had fluid in my ears, more on the right. He prescribed antibiotics and nausea medication and sent me on my way. I still could not even get out of bed more than 5 minutes, 4 days later I went to a emergency walk-in. They did a CAT scan, blood work, EKG and hearing test. No diagosis, but he put me on the predrisone (12 days) and gave me the patches to wear behind my ear for the motion sickness which really helped me function. I than saw my primary doctor a week later who told me to add mucinex-D and a nasal spray. 4 days later I was able to get into a specialist who did tell me after several tests that I had SSHL. He told me the tests showed nerve damage. When I asked if this was associated to my trip, he said probably not. He said all the treatment that I had done so far was the right course of action and told me he wanted me to come back in 2 weeks to see his associate. He said not to wear the patches, as my body has to adjust to my new hearing situation. This was all rather a shock, I was still feeling lousy. I have the fullness feeling on the right side of my head and a kind of ringing sound. I am also still a little sick to my stomach. I decided to see another ENT, who also confirmed the same thing. He said some people do regain hearing, he told me about 20%. He said that the good news was my body would adjust, and I would get used to it. The ist doctor called me back this past MOnday and told me he talked to his associate about me and they would like me to start taking a water pill incase there is any fluid in the inner ear they are unable to detect. I started that 3 days ago. I still have no change. I am on day 25. They have no reason for me as to why this happened. I did tell my doctors that I think they should offer more support, not just tell us and that’s it. I was very depressed this past weekend to the point I did not want to get out of bed because that’s the only place I felt normal. It takes a lot to get used to this feeling that’s going on on the right side of my head. I also worry about my other ear. Does anyone else worry about this? For those who have got their hearing back, does it just come back all at once and the strange feelings are gone? Anyway, just thought I would share, it’s comforting to know there are others out there although I would not wish this on anyone.
April 25th, 2007 at 10:58 am
I’m about 12 months on since my SSHL onset. I am due to go back for a final hearing test in 5 weeks and I will try out a hearing aid. Like you I would not wish this on anyone. At first I was pretty upset and disturbed that at my hearing loss. It has meant that I enjoy music less, but as time has passed, I have become able to tolerate music normally again. At first I couldn’t listen for more than 15 minutes without becoming fatigued from the way my ear reacted to it. I do have persistent tinnitus in my affected ear and still have a degradation in hearing.
The bulk of my recovery occurred in my first 3 days of prednizone and valtrex prescriptions. I did undergo a full two weeks of oral prednizone and two steroid injections behind the ear, but did not see any further improvement after 1 week from onset. All in all my loss is mostly above 4000 hz, but it has affected my speech recognition. Again, with time, I’m almost back to normal — the brain does a remarkable job adapting.
At some point you have to accept that it’s happened and ultimately there is nothing you can do about it but decide to adapt and be as comfortable and functional as possible. If I obsessed over losing some of my ability to acutely discern classical music details, I would drive myself crazy — I can’t afford to have that stress in my life. So I do the best I can with the hearing I still have.
Like you, I worry about this affecting my other ear. I have always had occasional ringing in my ears for different reasons (exposure to loud noise, inner ear fluid, etc.), and when it happens to my unaffected ear I pay very close attention. If I were to experience a prolonged ringing again and a degradation of hearing, I would be at the ER immediately demanding prednizone and testing. I am somewhat comforted to know that the statistics show it is pretty unlikely that a person will have their other ear subsequently affected, but it’s always a concern just out of human nature.
Good luck with the recovery of your hearing. Try to learn to be comfortable with the hearing you still have, and definitely appreciate it more! I have for a long time been very careful with my ears and loud noises. I am doubly so now. I don ear plugs for many things I do and avoid subjecting myself to longterm white noise exposure. This means I only purchase computers that are silent at almost all times of use — more expensive, but worth it in an effort to preserve what I still have.
April 25th, 2007 at 12:36 pm
Thanks for the feedback. It really helps to talk to people that this has actually happened to. I don’t think some people understand at all. They look at me like, oh well, you just can’t hear as well as you used to. They do not understand how it affects you. I am glad to hear after a year you are doing well. A year seems like a long time right now but it’s something to look forward to. Thanks again.
May 7th, 2007 at 2:35 pm
Hello all!
I too am experiencing Sudden Hearing Loss.. in my left ear. My story and treatment regime is much like the rest of your’s. Hearing tests show 20% loss in my left ear and nerve damage. I waited 2 weeks before I saw my ENT… only because I thought I was overreacting or I was just “hearing” things.
I seem to have the most trouble when I’m in a crowded restaurant.. the noise in so amplified it makes it hard to hear anything the person next to me is saying.
Has anyone had a diagnosis of Acoustic Neuroma? My ENT has not mentioned this, nor has he ordered an MRI (yet). Just curious if this has impacted anyone and what your treatment experience was like?
May 11th, 2007 at 3:15 pm
Hey guys,
I guess we all share similar stories! I’m on my fourth day of steriod treatment and as of yet no results. In my case, it started after a work out on 4 May 2007, a slight muffle in the ear. It went away afer a couple of hours, then it came back on that Sunday and got progressively worse until I woke up Monday and could not hear anything. I immediately went to the ER and then to an ENT, where the doctor broke the news to me. At first it was tough to deal with, but want can you do? SSHL is not something that happens because you’re in poor health or because you don’t take care of yourself. It is one of those rare things that happen to people indiscriminately. I eat extremly health, lift weights, road bike and stay very active. This circumstance was definitely out of my hands, much like everyone else. The only thing you can control is how you react to this very unfortunate event.
May 27th, 2007 at 8:49 am
Hello everyone,
It is very comforting to hear other’s stories. My hearing problems began 14 days after a deep second degree burn to my face, neck and chest. 4 days after my burn I was given high dose steroids and a shot of Kenalog. One day after the ending the oral sterioids I felt very dizzy and nauseated. This lasted for 2 weeks. Soon afterwords I woke-up with fullness and slight decrease of hearing in my ears. Within 4 days, the symptoms subsided. Consequently, I was put back on steroids for my skin. One day after completing the taper the fullness, tinnitus, and sound sensitivity returned, but mainly in my left ear. I went to an ENT, had the audiogram testing which revealed SSHL. I was placed on high dose steroids and had an MRI (which was negative). Interestingly, my hearing started to improve even before I had a chance to start the steroids, but I went ahead and took the steroids. The next day I felt great, even though I did have some slight tinnitus in my left ear. I returned for a hearing test and I did have a dip, but I was still in the normal hearing range. I was told that it appeared that I might have autoimmune hearing loss. I was devastated. As I went to taper off the steroids (around 50mg) my hearing loss returned, but then would returned to normal within hours. Every couple of days my hearing would fluctuate and then return to normal. On my last day of steroids my hearing was fine, and the next day I had the fullness and the tinnitus. Three days later I had another appointment with a different ENT (at which time my hearing was fine) who stated this was viral and not autoimmune, and that hopefully I was over my episode. Afterwords I went a month and was fine. However, I am once again having tinnitus in my left ear with a slight decrease in hearing. I am scared. Last night I took 2 antihistamines and went to sleep. This morning, I feel slightly better, but it is still there. I can’t swear that steroids helped me and my experience with this situation is that it comes and goes. I monitor my hearing by comparing the sound in each ear via earphones. If the situation gets any worse I will for sure go back to the ENT and I will probably get placed back on steroids.
Anyway, I have really felt comforted by reading others experience. My reaction has been the same….I can’t stand this situation, but like many have stated you have to learn to live with it.
May 28th, 2007 at 7:59 pm
Hello everyone,
I ended up calling the on call resident at our local teaching hospital and I was prescribed steroids. So far, I have taken 50 mg to no avail.
After reading everyone’s stories would someone mind sharing what their final diagnosis was? Autoimmune versus viral?
Also, I have found inserting a cotton ball in my affected ear has made the situation more tolerable.
Thanks
May 29th, 2007 at 9:08 am
I never received a final diagnosis per se, but my doctor did speculate that it was a latent virus reactivated for some reason. I go in two weeks for a final hearing test and to examine the option of wearing a hearing aid.
May 29th, 2007 at 5:53 pm
Hello Matt,
Thank you for your quick response, it really means a lot. As you know this is a terrifying situation.
I have an important question, did you ever have a reoccurrence of your symptoms?
I also believe my is a latent virus, but I did two stupid things; one I went jogging and I also went to the MTNs and 7-8 days afterwords my symptoms returned. I predict that I still had some residual inflamation and that both of these activities reactivated the tinnitus. Who knows…but I pray it is not autoimmune. Yesterday, I did take 50mg of oral steroids and today I have taken 20 mg, and I feel back to post burn baseline (a very mild constant tinnitus and my hearing seems basically normal). I am really thinking about only taking 10 mg tomorrow and seeing how it goes. Steroids can be so wicked so I am trying to avoid taking too much.
Thanks again for your reply.
May 29th, 2007 at 9:46 pm
Hi Mary -
No, I’ve never had a recurrence of my symptoms. I do have fairly constant tinnitus, though it fluctuates in intensity some. Mostly it varies with my stress level, fatigue and caffeine usage. Off of caffeine completely, it is its mildest. There are brief spark ups in level of tinnitus, as well as occurrences where it goes completely quiet. These both generally last a few seconds.
I too really hated being on the steroids. I had very high appetite while on them and gained some weight I subsequently had to lose. Friends told me I’d feel strong as an ox on the steroids, but I just felt beat almost the entire time.
Good luck with your symptoms — hopefully they improve and either way, you can adjust to them. The brain is capable of adjusting to a lot of conditions. I think you’ll find over time yours will manage as well. For a good month or two I could barely stand to listen to music as it was highly distracting and fatiguing. Now I can listen to music pretty much indefinitely without either side effect.
Take care!
May 29th, 2007 at 10:28 pm
It’s amazing how many people experience SSHL and what little information is available. As an outsider it is hard to understand exactly what it feels like and for someone with SSHL it is difficult to explain to others what is happening. I thought I could give you a spouse’s perspective. Here’s some ways we have adapted:
- At restaurants, we request a quiet table, preferably a corner table. I sometimes do this when making reservations and many restaurants are willing to oblige. This can make your dining experience much more pleasant.
- When going out with a group, Matt strategically sits so that his “good ear” is facing everyone. I will often sit by his “bad ear”.
- When going for walks I try to position myself on the side with his “good ear”.
Maybe others have ways that they have coped with their hearing loss?
May 31st, 2007 at 5:57 pm
Hello Laura,
Thank you for the feedback and suggestions. The only other idea I have heard of is tinnitus “masker”.
I also try to sit with my bad ear toward the wall.
Thank you both again for your feedback.
June 5th, 2007 at 2:52 pm
Update!
Still suffering from hearing loss (25% in left ear), fullness and occassional tinnitus. ENT ordered a MRI which came back with good results! He presented me with a surgery option… which may or may not help me.
This past Friday (6/1/07) he inserted a tube in my left ear and injected steriods directly into my ear. I will have the steriod injection treatment a couple times a week for about 3 weeks. ENT reports that I have a 60% chance to restore my hearing 100%. Figured it was worth the chance.
The procedure to have the tub inserted was a breeze. Outpatient surgery and I was basically put to sleep… so i didnt feel a thing. Recovery was no problem either… a little discomfort in my ear, but nothing really to complain about.
I will have to have at least 6 other steroid injections in my ear. These will be simple office visits. Had my first injection earlier this week and am sorry to report that it HURT awful bad. Ear area was sore and uncomfortable for about a hour after.
Has anyone else had this type of procedure and what were the results? I will be anxious to share my hopeful good news with you all soon!
June 6th, 2007 at 9:47 am
I had two inner ear injections of steroids. I too felt it was worth the try to restore my hearing, however, they made little to no difference at all. My MRI was negative for any sort of growth on the nerves involved with hearing.
Good luck with your treatment — I hope it makes a difference!
June 6th, 2007 at 10:20 pm
I’m sorry to say that I am one of the unfortunate ones. I lost my hearing on Jan. 8, 2005. I spent 4 days in the hospital where a doctor never bothered to even offer to bring in an ENT. I didn’t know any better, so I didn’t ask for one. I was so traumatized by my hearing loss that I wasn’t thinking straight. If anyone is reading this, please don’t let up on trying to get the best treatment as fast as possible. When I got home, I couldn’t eat, because I could hear myself chewing and breathing. The tinnitus would drive me crazy. One time I just wanted to take off running down the street, but my husband stopped me. I’ve been to so many doctors since then to no avail. During all this, I’ve slowly, but surely learned to make peace with this ordeal. Sometimes I still feel anxious about it, but I want everyone to know that you do get used to it, even thought you’re never really satisfied with your hearing especially if it’s profound loss like mine. Sometimes I do feel sorry for myself because I’m not “normal” and I ask “Why me?” Other times I’m thankful that it’s helped me to develop a better relationship with my God. They say everything happens for a reason, and I sincerely believe that now.
June 6th, 2007 at 10:28 pm
I’ve always wanted to ask if anybody still has ear pain after their hearing loss. I supposedly had a flu virus that got to my inner ear and that’s how I got my loss. At least once every other day I’ll get jabs of pain in that ear, then I’ll be fine.
June 7th, 2007 at 8:02 am
I never had pain with my hearing loss — it was tinnitus, reduced hearing and the “full” feeling as though the ear has filled with fluid. Hopefully your pain will diminish.
June 8th, 2007 at 8:15 am
Thanks for caring, Matt. It’s hard for people to understand what it feels like to not hear normally. I often feel like I’m “damaged”. I know this sounds silly, but I still have hope that my hearing will return. I still get headaches esp. on the left side of my head (my hearing loss is on that side) and my eyes frequently hurt. I sometimes wonder if there’s still some kind of active infection going on in there. I’ve already done the prednisone and famvir routine to no avail. While in the hospital for something else I got heavy intavenous doses of antibiotics. Nothing helped my hearing loss. I have constant aching on my head around my ear and down my neck. I don’t know why I’m telling everybody all of this. I guess I’m thinking maybe someone might be able to shed some light on what all these aches and pains might mean.
June 8th, 2007 at 11:58 pm
I’m so glad I found this site…it is comforting to know I’m not alone. I lost almost total hearing in one ear 4 weeks ago and 7 days ago the other ear started ringing, too. I went back to the ear surgeon today and he said in 27 yrs. he’s never had a patient with Sudden Onset to have both ears affected like I have. I have noise in both ears now and I am suffering from anxiety because of it. I am a musician and this has stopped me in my tracks. He wants an MRI and bloodwork and also has asked me to see a colleague of his. It almost makes me want to give up knowing that my ENT surgeon is stumped. The steroids didn’t work and they make me feel horrible. Now I have to start taking them again. Has anyone at all out there ever had both ears affected? Please reply if you have. My heart goes out to all of you….God Bless You.
June 9th, 2007 at 5:25 pm
Hello Jeri,
Hang in there. I have seen 3 different ENT specialist. My ordeal started at the end of March ‘07 and initially I had fullness and tinnitus in both ears, which now appears to be only in the left ear (suddenly, after about 6-8 weeks my right ear returned to normal). I too hated the steroids, but I am glad I took them (in the beginning I swore the steroids caused the situation to be worse….but I think I was wrong). I feel for everyone, I too am very scared and anxious. I know exactly what Gracie means when she says “it’s helped me to develop a better relationship with my God.” I pray to God everyday this situation does not get any worse. I have changed my lifestyle a lot. I nolonger drink anything with caffeine, I take a vitamin everyday, and I try not to eat sweets. Something with lying down flat makes the tinnitus worse. Also, I no longer exercise, play golf, fly on planes, or go up to MTS. because I believe the increase in my cardiac output or increase in altitude makes the tinnutis and hearing loss worse. As a result, I have spent many of nights knocked out on Benadryl upright in a chair. I thank God for my husband, I could not make it through this without him. My biggest fear is that the tinnutis and hearing loss will get worse and that I will be dx with autoimmune hearing loss. Best of luck to everyone.
June 9th, 2007 at 5:51 pm
Hello Gracie,
I also wanted to address the pain you have. Shortly before the onset of the tinnitus and fullness, I had a really bad headache, on the right side of neck neck and nausea and vomiting. It was like a real bad vascular headache (unlike any headache I have ever had). Since the onset of my hearing problems this same type of headache has recurred on the right side (my hearing loss to date is on the left side), but this headache does not occur as frequently as it did in the beginning. I do think it is related to the hearing loss and I think it is some kind of increased intracranial pressure which was probably caused by the virus…which caused my hearing problems!
June 14th, 2007 at 7:26 am
Mary,
When I got home from the hospital after about 4 days, I had terrible pain in the back of my neck. I, too, spent months awake every night waiting for the other shoe to drop. I did lose some (very little) hearing in my right ear too eventually. All of this caught me totally by surprise as I never had any problems with my ears, no infections ever.
I’m wondering if anyone out there has ever taken beta blockers or Lotensin. I can’t help but think that these meds affected and are still affecting my hearing.
June 14th, 2007 at 7:41 am
Jerri,
My heart goes out to you. I have to admit that losing my hearing was one of the most traumatic events in my life. I was in the hospital at the same time as my dad. Little did I know that he would pass away 3 weeks later. It was a double whammy for me. I remember trying to steady myself by holding on to the walls at the hospital the night before the morning that I was admitted. (I had gone to see my dad.) I always try to remind myself that what doesn’t kill you can only make you stronger. So, put yourself in God’s hands and ask Him to do His will. He never lets you take on more than He thinks you can handle. You are stronger than you think!
June 14th, 2007 at 5:31 pm
Gracie, Matt (or anybody),
1. When do know that the situation has past (meaning…the situation has stabilzed and it what it is)? I swear I could maybe accept what is going on, but I am in constant fear it is getting worse.
2. Also Matt, you said when you get stressed the tinnitus increases. The last couple of days have been very stressfull and I can hear the tinnitus in situations where I usually don’t. As far as I can tell there is no increase in hearing loss….just increase in this soft sound tinnitus in left ear and then random beeps in right. My older sister left some valium and I have taken one every night when I get home from work and this helps…but it returns the next day when I go back to work. So..could someone try and explain what their tinnitus is like in very stressfull situations? I swear I am going crazy.
June 14th, 2007 at 7:29 pm
Hi Mary,
My loss seems to have stabilized. I notice very minimal fluctuations in tinnitus and the amount of perceived loss I have. In fact, a follow-up hearing test I had this week confirmed that my loss has been very stable.
My tinnitus increases with caffeine use, exhaustion and stress. The way I perceive this is that I notice the tinnitus more and it seems to interfere with my hearing more than normal. I guess the best way to put it is that it’s more distracting than it normally is — I have a harder time ignoring it.
For me the key is deciding to just move on and live with the fact that this happened. I know everyone approaches these situations in their own unique way, but I find that being positive about what I do still have in terms of hearing helps. I often think about the disability it does present me — it’s much smaller than a lot of other accidents could cause.
June 14th, 2007 at 8:29 pm
Mary, unfortunately I can’t tell you exactly when I knew that it was stabilized, but I had read somewhere that if you don’t lose your hearing in your opposite ear within 2 years, you probably can consider yourself safe. ( I’m sorry, I wish that I could say the time frame was shorter.) It’s been about 2 and a half years for me, but as it turns out I did gradually lose some hearing in my right ear which seems to have tapered off already. I guess you can never really be sure. My tinnitus seems to be different now than it was at the beginning. I used to hear bells, clicking, drumming, buzzing, hissing, dripping and other weird noises like when you put a seashell over your ear. Now I mostly only have the seashell sound I mentioned and sometimes a whistling sound. I understand these last two I mentioned are very common with neurosensory hearing loss. I still mourn the loss of my hearing, but life goes on. Thank God I’ve gotten to the point where it is no longer the focal point of my existence. There are so many other important things in life. You mourn for a time, then you go on. I know that sounds dumb, but essentially that’s what it amounts to. And as far as anybody really understanding, if they haven’t gone through it themselves, they will never understand.
June 19th, 2007 at 3:56 pm
I’m relieved to read others’ experiences. I suddenly lost my hearing just last Friday, went to the ER that night, was ridiculously sick over the weekend, saw an ENT yesterday and I’m just waiting now. My experience so far has mirrored you all. I just started the valtrex and steroids today, and I’m dreading any side effects. So far I just feel crummy and can’t hear out of my left ear. Funny thing is that my husband went through a very similar experience over a year ago, took the steroids and nothing worked. But amazingly his hearing came back ever since he stopped using nose spray. It’s anecdotal, of course, but he’s convinced that the nose spray was the cause of his problem. (I don’t use nose spray.) I’m trying to figure out how to function at work. I’ve always been a very active and healthy person so I really don’t know how to deal with this, yet. Thanks to everyone for writing. Maybe the steroids will help me.
June 22nd, 2007 at 8:13 pm
Hi friends! I do confirm that steroids work if the origin of
SSHL is VIRAL and the loss is moderate (90 db) have the worst prognosis. If SSHL regards
low and middle frequencies (125 … 2000 Hz) the probabilty of obtaining
a full recovery is very high
June 24th, 2007 at 4:15 pm
Thanks for this website. I am in the midst of coping with SSHL that occurred 6 days ago. I am now on steriods, also dreading the side effects! I am an active, healthy 44-year old woman. I never imagined going through something like this!
My hearing is totally gone in my right ear. The audiology test I took showed severe hearing loss. So I am anticipating things will not be the same.
I hope you all receive the recovery and support you need.
June 24th, 2007 at 8:35 pm
It’s been 4 months since my SSHL. I had severe vertigo which left me bedridden for the first month. I still have residual vertigo. I also have very loud tinnitus. I received oral steroids, Valtrex and Prednisone injections through my eardrum. The steroids and Valtrex were started within 24 hours of my hearing loss; the injections were started 5 days later. Nothing helped. I am left with profound hearing loss in my left ear. The 5 different doctors I went to all pretty much said the same thing, that my hearing will not return, the tinnitus will not go away either, but that the vertigo will eventually subside once my brain adapts to balancing my body with one working ear. The docs also told me that it was viral or vascular, but were not 100% sure about either. They are only guessing because they really don’t know what causes it. One month after I lost my hearing, my father passed away suddenly, so I kind of got a double wammy. I had not yet dealt with the loss of my hearing and now I have to grieve the loss of my father as well. Life isn’t fair sometimes. I am not able to use a hearing aid because I pretty much have no hearing in the left ear. They told me I would need at least 50% hearing and 50% speech discrimination to get a hearing aid, so I don’t qualify. My only option they said was something called a bone anchored hearing aid (BAHA). It is for people like me who have no hearing on one side and good hearing on the other. Has anyone out there gotten one of these implants? I would like someone’s opinion before I do something so drastic. According to the website, people really like it, although I’m sure the company website is biased somewhat.
June 26th, 2007 at 1:33 am
Hi Mary and others: So sorry about your father. I really hope things improve for you. At least you have this site to post on. I cannot answer your question about the BAHA as I am a “newbie” dealing with SSHL.
I am wondering two things about tinnitus from anyone out there. Do you notice your tinnitus affected by
caffeine
flying?
I’m asking as I drink quite a bit of caffeine and I am flying next week. my doc says since it’s inner ear damage I should be okay.
thanks, and take care.
Christine
June 26th, 2007 at 6:09 am
Hi Christine,
I definitely notice caffeine use increases how noticeable my tinnitus is. I have not noticed it with flying, however. I may be a bit of an outlyer on that one, though. I have for years worn ear plugs (and still do) on airplanes because I find the bombardment with high frequency noise to be fatiguing. I am much happier wearing a pair of foam ear plugs for the flight than not. In recent years I have been using either foam ear plugs or my etymotic er6i earplug headphones on flights.
These provide an acoustic separation much like an earplug does, but have a very good audio driver in them as well (I believe etymotic either used to or still does make hearing aid audio drivers). I will often use them to watch movies or listen to music, but because of the acoustic separation they provide, I do not have to turn up the volume very loud at all.
June 26th, 2007 at 8:20 pm
Thank you Matt. I will definitely have my supply of ear plugs on hand. I may even try experimenting w/the caffeine although, I reduced it to 1/2 c. of coffee today.
the tinnitus is really strong today, it’s starting to get to me that I can’t enjoy the music as I used to. It’s one thing to lose your hearing, but entirely another to replace it with the sensation of being inside a jet engine!!
July 1st, 2007 at 5:15 pm
Hello everyone,
Thank you Matt and Gracie for your feedback acouple of weeks ago. I have often re-read what you both wrote and it has really helped me feel better.
I have found what I feel is a great article on tinnitus. I especially like the points made about the affects and treatment. I hope this helps others who may be feel anxious over this condition.
The website: http://www.houseearclinic.com/tinnitus.htm
July 2nd, 2007 at 11:22 am
Hello All!
Another update on the steroid perfusion (or injections)… No improvement.
Thankfully, I haven’t had much tinnitus. Just the constant fullness in my ear.
A couple of you mentioned caffine… which the doctor told me to avoid, and I have been…. however, I am starting to pay attention to how my diet effects the fullness and my hearing… Have any of your doctors mentioned anything about food allergies that may cause this?
At this point, I am learning to live with this… the hardest part of that, is that somedays, I try to “think” myself better and actually think, “Ok, maybe it is better today”… then something happens to remind me that its not!
Thanks to everyone and all the posts! Just knowing that Im not alone is a great comfort!
July 2nd, 2007 at 5:33 pm
I just found this site. Wow, there’s so many of us who have experienced such a devastating, puzzling, and unexpected loss.
It’s been 2 years since the hearing and word recognition in my right ear was replaced with a constant whooshing sound which initially drove me crazy. I was quite devastated when all the frantic visits to specialists, the oral steroids, injected steroids, Valtrex, the Hearing Pill; etc. resulted in no improvement.
Finally, after sending my records to the head of Mass Eye & Ear Institute, who basically said “good luck, there’s nothing that can be done”, I became resigned to the fact that my hearing would never return.
I must say that for the most part, my life is not that different. I’ve adjusted. I’ve learned not to pay attention to the whooshing sound and have found that sitting at the seashore completely eliminates it. The beach is my favorite place in the world, so I guess my goal should be to spend more time there.
The condition bothers me most in large open rooms where the background noise is amplified; and if someone is sitting on my right side and tries to make conversation with me- forget it! So in public settings or business meetings, making conversation is difficult and frustrating. I force myself to stay as long as necessary; what an enormous sense of relief when I’m able to leave.
The most unnerving part of the condition is that I can’t tell which direction sound is coming from. When I hear a siren while driving, I turn my head in every direction until I can figure out whether I need to pull over.
I go to concerts and make sure my seats are as far over to the right as possible, with my bad ear as close to a wall as possible. Many of you say you wear earplugs at concerts and I know I should make more of an effort to do this.
I wasn’t aware that caffeine makes the tinnitus louder. Thank you for this information. I’ll pay closer attention to my caffeine intake.
From time to time, I check the internet for new treatments, research studies, and new developments…maybe some day all of us will regain what we lost.
July 3rd, 2007 at 8:34 pm
Jane,
Thanks for sharing your story. Everyone’s story is really helping me adapt to the tinnitus. I am really glad to hear that your body gets adjusted to the tinnitus….I just can’t wait for that time to come for me.
I have laughed a couple of times thinking about your comment on how sitting at the seashore attunuates the whooshing sound, and so your goal is to spend more time there. That is a great way to look at it. And really when I think about it, I love to sit on my deck and read books, and for the most part I can’t hear the tinnitus when I am outside.
I don’t know if you have checked PubMed or UpToDate for the latest publications or treatments. Also clinicaltrials.gov will post any current clinical trials.
July 3rd, 2007 at 9:38 pm
I totally agree about the tinnutus and the noise. and not recognizing where sounds come from. I always pick up my phone at work, not being able to tell when it’s my ring and when it’s someone else’s!!
I’ve only been dealing w/this about two weeks. The prednisone pill course did nothing. Right ear totally gone.
Tinnitus is worse. Feeling of “fullness” too.
I’m getting an injection Thursday. Intratympanic. Anyone had one? I’m a little reluctant but don’t want to regret any chance to save something.
Take care and you’re not alone!!
July 3rd, 2007 at 10:04 pm
Just browsing and found this website and what a relief. I woke up Memorial day morning completely deaf in my left ear. Didn’t realize the deafness, just thought it was “stopped up”. Went to use the phone and thought it was dead and then realized after changing ears, that I could not hear. Being a holiday, I went to local MD the next day, nothing physically seen but given Amoxicillin & Zyrtec. On my own, got an appt. with a local ENT that Thurs and she said it must be a vasular occlusion, very rare, gave me a steroid shot, told to take ASA qd & return in 2 weeks and if no improvement would do CT. That weekend I searched the net and found out about the NIH study and sent correspondence to all facilities involved. Some wonderful Dr. Lee from Mass Eye & Ear contacted me and since I live in Ga. and it really was not physically feasible to be in the study, suggested Dr. Mattox, head of Emory ENT. On my own I couldn’t get an appt. for at least 2 months but evidently Dr. Lee e-mailed Dr. Mattox & his nurse contacted me and I got in on the Friday of the 2nd week after onset. He explained that he had seen limited success with TM steroids but most of the patients he saw were into their 2nd or 3rd month when he saw them. I started injections that day and received my 4th one June 22. A CT & MRI with attention to IAC has been totally negative, no explanation for sudden hearing loss and I have had no improvement whatsoever. He said he has seen some improvement in as far out as 3 months but with the profound degree of loss I have he is not very hopeful. I am to go back in 3 months if I see no change and discuss one of the 2 appliance options. The BAHA really looks the most favorable. The hearing loss itself is bad enough, especially since I do play piano for my church but also, the tight vacuum feeling I have at times and the tinnitus and whooshing sound. I had never heard about caffeine or maybe even salt making this worse. Does anyone really know if that has an effect on it? I certain could adjust those intakes if it would make an improvement. I now know what a “deafening silence” is. What is really strange is that I was treated for a viral eye infection about 6 weeks prior to this but there has been no link made. I find myself watching ‘mystery diagnosis” on Discovery Health and still trying to diagnose what is going on. Everybody looks at me kind of crazy when they hear about this and the fact that no one has been able to find out what causes this. It really is strange for you to go to bed with no warning signs and then just wake up totally deaf on one side. Thank God from everything I’ve seen, less than 5% progress to bilateral. It does make you rather paranoid. Anyway, this website has been very encouraging and am marking it for a favorite to keep up. Thank so much.
July 4th, 2007 at 5:38 am
Susan,
I found this information from the website: http://www.houseearclinic.com/tinnitus.htm
It does not mention a low sodium diet..but I too have heard to avoid salt. Good luck; hang in there!
General Measures
Avoid all forms of loud sound. If you must be exposed, use ear protectors such as ear plugs or earmuffs. If you are exposed to certain sounds which increase your head noise, make it a point not to repeat that experience.
Make every effort to avoid nervous anxiety, for this only stimulates an already tense auditory system.
Make every attempt to obtain adequate rest and avoid over fatigue.
The use of nerve stimulants is to be avoided. Therefore, excessive amounts of coffee (caffeine) and smoking (nicotine) should be avoided.
Learn as quickly as possible to accept the existence of the head noise as an annoying reality and them promptly and completely ignore it as much as possible.
Tinnitus will not cause you to go deaf, will not result in you losing your mind or cause your death, so immediately forget such distracting and terrifying thoughts.
Tinnitus is usually more marked after one goes to bed and his surroundings become quiet. Any noise in the room, such as a loud ticking clock or a radio, will serve to mask the irritating head noises and make them much less noticeable. Tinnitus Maskers and Sound Conditioners are also available (see below).
If one sleeps in an elevated position with one or two pillows, less congestion to the head will result and the tinnitus may be less noticeable.
Sedatives of various types may be used occasionally for temporary relief.
July 4th, 2007 at 6:38 pm
Christine,
I had the steroid injection. I tried it when I was approximately 5 weeks into the hearing loss. It didn’t work, but who knows, maybe it would have worked if I’d tried it sooner.
It wasn’t painful, just a weird sensation.
Good luck! I hope you have success.
July 6th, 2007 at 12:11 am
I also was just browsing and found this website–what a relief to hear all of these stories and many are so similar to my own. I SSHL started after a good workout. I did some strenght training with weights and also some cardio–using the treadmill. The next morning I woke up with a severe case of vertigo. My since of balance was completely off, I can remember walking down the hall holding myself up with both arms just to make it to the kitchen. It was terrible…I immediately went to the ER and the doctor said it was caused by my sinus problems. I also stated to the doctor that my left ear was making some funny noises and beeps like (video games sounds) which was very weird. I was given meclizine for the vertigo and told to take over the counter sudafed for the sinus. The next morning it was worse, I could not even take four steps with out falling to the floor. My ear was still making this noise and felt like I was in an unpressurized plane. Another doctor at the ER gave me Diazepam and prochlorperazine for the vertigo and nausea. The third day…there was no change, I went to another ER at a different hospital and the doctor on site listen to my tragic story then proceeded to inject me with a steroid shot and referred me to an ENT. I tried the prednisone orally for 14 days, then went to the injections in the ear with the steroids. Initially the left ear was considered “dead” the first time I got it checked by the audiologist. But after 2 injections and 6 weeks, I have some hearing back in that left ear. I can recognize tones and discriminate words/voices. I can even use the phone to the left ear as well but hard to hear in an open room/forum/gym or other open spaces of many people talking at the same time. My ENT has stopped the injections of the steriods at this time and want to see me in another 2 months. She seems to think that time is the medicine at this point. I sometimes question if she is right. If I have made such progress with the shots, shouldn’t I continue. My wife wants me to see another ENT, and get a second opinion. I am going to give it a few weeks to wait and see. I too was saddened and depress about loosing my hearing in a matter of three days. It is still quite the mystery for me…but I put everything in God’s hand now, I believe everything happens for a reason–if it’s meant to be then it shall be. I have adjusted to some extent; I used to be a work-a-holic and a gym rat; now I take the time to appreciate life to the fullest. It has made me more spiritually with God and my Family now. Like the cliche’ goes “you never miss what you have until its gone” speaks volumes. I wish must success to each and every one of you and god bless!
July 6th, 2007 at 5:09 pm
HI everyone, thanks for your words on the injection. I had one yesterday. Funny my mom asked me, “can you hear now?” LOL.
Curt I’m really glad to know you are regaining some hearing! congratulations.
It is good to hear some stories like this.
It truly is amazing to know what has happened to us, so suddenly. It is also strange to get the reactions that we do, when we tell people. I think Susan mentioned some of the less-than-supportive responses. It is disappointing. That’s what makes this collective even more valuable.
I was also wondering, if you’d heard about vigorous exercise as recommended or not recommended w/SSHL? I seem to have read something advising against it, also heavy lifting or straining?
Take care,
July 8th, 2007 at 2:31 pm
I received my last steroid injection and the audiologist said to put it bluntly, that left ear was “dead”. Dr. Mattox at Emory says they just haven’t “cracked the code” on SHL. He did show me the Baha and I think that after about 3 more months, if I haven’t improved, I may try it. Even though it is minor surgery it just seems to be less of an interference than having to wear devices in both ears. People look at you so crazy when you try to explain what is going on like your stupid to accept there isn’t that much known about it. They say there aren’t that many cases reported but if I had taken my first regular Dr. & the first ENT’s advice, my case would not be reported. I’m sure there are a number of people who never gotten treatment. Even though as you all know there are much worse things that could happen but dealing with this is certainly no picnic. Makes you realize how quickly life can change.
July 8th, 2007 at 3:54 pm
Hello everyone and thanks again for the valuable information. Hi Christine…to answer your question about SSHL and its relation to vigorous exercise being recommended or not, I am not sure. Initially my ENT stated that I should refrain from any strenous activity–but this was when the vertigo had me feeling really bad with no sense of balance. When the vertigo finally subsided, I thought it would be ok because I was feeling ok with the exception of the SSHL. I did not try to exercise because I was basically scared of what would possibly happen. This is really hard for me because I used to be an athlete and exercise was a major part of my life and my family as well. I even notice in a little over a month, I probably gained about an extra 20 pounds. My health club friends see me and say “where have you been” or “putting on a few pounds I see” but what can I say…like someone said earlier, they look at you strange when you try to tell them what is going on with you. Now, I don’t even bother trying to explain. I also think I heard someone else say that you shouldn’t exercise if you have SSHL, but I didn’t get that affirmed by a physcian as of yet. It kills me when my son asks me to come play ball or to wrestle with him and I refuse…or when I see my wife working out and I can’t. I just wish there was more that can be done but then I think about those who are severely less fortunate than I am.
July 8th, 2007 at 5:23 pm
Hi Susan,
I was wondering if your ENT told you if there was a required number of injections that you should receive in your ear? I’ve only received 2 and I am seeing some improvement, but my ENT feels I should play the waiting game now. I am considering a second opinion.. this question is also open to anyone else.
July 9th, 2007 at 9:15 pm
Curt,
I received a total of 4 injections, one the first day I went, 2 the next week and then 1 the following week. I never had any improvement during this whole time frame and still don’t. After my 4th injection, he ordered another hearing test and there was still no improvement so he felt we should stop the injections. I asked what was the longest time frame from receiving shots to improvement and he said he had seen it be 3 months. My hearing loss unfortunately was so profound that he told me from the outset that the likelihood was not that good that I would improve but there was no other treatment. There is study the NIH is doing and although Emory is not involved, Dr. Mattox does review the findings from the study so I’m sure he has seen a lot of data on cases. The fact that you are noticing some improvement is great, hope you can continue to improve. I think I could adapt to the deafness better if the ringing in the ear wasn’t so loud. Dr. Mattox said this would dissipate so I’m hoping. Let me know how you go. I think I would try for at least another injection or two unless there is something contradictory in your case. Good luck
July 11th, 2007 at 11:40 pm
Susan,
Thanks for the information….I will call my ENT and request that I have at least another injection next week. Keep me posted on how things are going with you and I’ll do the same. Good Luck
July 18th, 2007 at 11:32 am
What the heck, if you get the injections at least you know you tried as many options as possible….my friends encouraged me to get as many injections possible. I’ve only had one, and that has shown no difference.
I have been traveling, in a foreign country, and have had some times of definite frustration, but overall, I’m trying to ignore this problem. My husband helps tremendously. I’ve been exercising, swimming, walking, etc. Trying to live as normally as possible. Sometimes I’m distracted enough to briefly forget the tinnitus.
July 19th, 2007 at 11:24 am
I found a website that had some interesting information about SHL. Of course it was a site sponsored by what I think are vitamin/mineral manufacturers so I’m sure it could be somewhat slanted but at this stage I think we are all grasping for any info we can obtain. It did mention some improvement (if treated early on which we seem to finally learn after the fact) with additional treatment with Vitamin E. The website is www.sona.com. I can’t remember which phrase I googled to get there but it has several articles about it and the role of antioxidants, etc. in treatment. At this point over a month and half into this with no improvement with TM injections I just pray each day for spontaneous recovery and if not that, to help me deal with the situation. I’m in the acceptance mode I think right now and if the good Lord gives it back it will just be a wonderful gift. It is interesting though, that I guess paranoia makes you start feeling pain and wondering about your good ear. As with most things in life, I do believe they happen for a reason and as I’ve said from the start, when you look at other people’s situations and realize that something far worse could have happened to you, you have to be somewhat grateful. At least we can walk, talk and see normally. I also read about the possibility of this being a vascular occlusion and if so, thank God it happened in the ear and not in a major part of the brain. All in all however, it is some big adjustment and if you let yourself go there, leads to a lot of paranoia. Anyway, my psychological overview of this is over, I just try to kind of look at it in a humorous light overall because you either cope with it or not and I’ve chosen to turn it over to the Power greater than me and live with it day by day like everything else that comes into your life. I did note it interesting in the article about Vitamin E that they discussed early treatment including bedrest. I never “took to my bed” with this and I can’t tell that really any activities of daily living have really affected the tinnitus. Everybody, take heart, let us know of any successes you have, we can live vicariously through you maybe! PS: The actual website that printed on the bottom of the page I discussed is http://www.sona.ie/pfnews.asp?id=12810
July 23rd, 2007 at 10:56 pm
It is amazing to realise I am not alone, three years ago after a virus, I lost all hearing in my left ear, after treatment I got some back but it is not enough to use a telephone or listen to television. Three weeks ago, I lost all hearing in my right ear, have had treatment and am waiting for an mri, the chances of losing hearing in both ears is around one in 10,000. I am trying to stay positive I believe the mind to be very powerful. It is extremly hard to adjust and maintain friendships. God bless each and every one of you.
July 24th, 2007 at 10:19 am
Hi all,
I found this site looking for info on those who had experience SSHL and were prescribed steroids. I lost most of my hearing about 5 to 7 yrs ago and got a cochlear implant 3 yrs ago. It’s been a lifesaver, totally. However, two weeks ago I lost the remaining hearing in the non-cochlear implant ear (I’d had about 50% of my low frequency in that ear). They want to give me steroids and I”m very doubtful whether it’s worth it. To anyone who is curious or might be considering a CI, feel free to email me with questions about my experience at llcsister at yahoo. Thanks to all of you for writing above, it was very helpful. Laurie
July 28th, 2007 at 11:09 am
This is exactly what I expected to find out after reading the title Sudden Sensorineural Hearing Loss. Thanks for informative article
July 31st, 2007 at 7:30 pm
Susan and others,
I tried the antioxidant path and I’m sad to say I didn’t get any results. I was put on them by an ear neurologist. (I think these type of doctors are called neurotologists.) I think if anyone knows anything about ears and hearing loss (especially sensorineural) it’s them. Imagine my disappointment when he told me my diagnosis after seeing 4 other doctors, including 3 ENTS. Anybody who hasn’t experienced the agony and disbelief that I (that we) have experienced is totally lucky. I was stunned to say the least when I knew that I would never hear anything through my left ear again. At the beginning I felt like a wanted to cry and scream, but I couldn’t, because that would have meant that I had given up. I didn’t want for my daughter to see me crying and desperate. I had been holding out hope until then. Even afterwards I tried 2 more ENTS only to have my diagnosis confirmed. The last ENT I saw was for the purpose of inquiring about the BAJA, but we never got past that, as he noticed I had a lump in my thyroid. Everything else was put on the back burner and I haven’t gone back because I’m a bit scared of infection. Think of how close to the brain the surgery would be! Not to discourage anyone, because I sincerely wish that I could do something to heal all of you alls pain. I will pray for all of you tonight and every night that God will make you whole again.
August 1st, 2007 at 12:15 pm
I am seriously considering the BAHA and really hadn’t thought about some of the possible horrible complications. I do know people though with demand pacemaker that their heart depends on that battery to beat and AICD implant patients. If anyone reading this has experience themselves or knows anyone with a BAHA, please share your thoughts. All input will be greatly appreciated. I’m still rocking on with no improvement. I’m sorry the antioxidant route didn’t help you Gracie, but I hate to say that at least I now feel I maybe didn’t miss some viable option for improvement that I didn’t know about during the first few weeks.
August 3rd, 2007 at 11:59 am
Susan, my audiologist gave me the name of an alternative to the Baha ,and it doesn’t involve surgery. I tried to contact the company, but they were not able to help me because they could not provide me with a local place that could provide the device for me. I will forward any info that I can shortly.
August 3rd, 2007 at 12:18 pm
Susan, the name of the device is TransEar and you can get info about it at eartech.com. The device is like a hearing aid that works by channeling sound through the bone like BAHA, but there’s no surgery involved. Please let me know if this helps. God bless!
August 10th, 2007 at 1:02 am
Mary, Susan, everyone,
I have to say that it really freaks me out when I hear so many of you saying how you can’t localize sound, how you pick up the phone not really knowing if it’s yours that’s ringing, how you look all around to figure out where a sound is coming from. Sometimes I feel so stupid and confused. I think I must look like an idiot to others. Sometimes I hear the wrong things and end up answering the wrong thing. It’s crazy how closely related speech and hearing are, how not hearing properly interferes with your brain. I used to feel so tired all the time when I first lost my hearing in my left ear. I always doubted that I had sensorineural hearing loss. It’s been so hard to accept, but the more I see how similar we all are the more reinforced the idea becomes that that’s what it is. I think I’ve always held out the hope that it could be something else that could be cured.
August 12th, 2007 at 6:53 am
Gracie,
Thank you for all your entries. You seem to hit on everything that I feel. I too have been so tired since all of this happened. I too have tried anti-oxidants to no avil. However, like everyone said, I am starting to accept and adjust to what has happened.
Next week I am scheduled to fly across country to Ca., and I am a little worried about the pressure on the plane and the effect it might have on my ears. I am taking some steriods with me just in case.
Anyway, thank you again Gracie for all of your support!
August 12th, 2007 at 5:56 pm
Hi everyone: Mary, I flew to South America last month and had no trouble inflight. in fact, the tinnitus was less noticeable while on the plane, due to the high volume of “white noise” experienced while flying. I just took a few ear plugs for the good ear to use while sleeping.
on the ground though; lately I’ve been experiencing a “vibration” of sorts in the “bad” ear when there’s a noise, the tinnitus responds by getting louder. It’s hard to explain.
Take care.
August 14th, 2007 at 9:05 pm
Hello Christine,
Thank you for the feedback. I am wondering if the “vibration” sensation that you are experiencing is the result of the extended plane ride? The reason I suggest this is because the end of May I went up about 3500 feet (hiking) and also went running; a week later (delayed response) I had another episode of hearing loss and increase tinnitus. Afterwards I have cut back on running and hiking and now just go for long walks. Consequently, I have had no more episodes of hearing loss. My doctor instructed me to not do any exercises that jarred my head for atleast 6 months.
Anyway, how are you doing with your hearing? Did your right ear recover? I am about 5 months into this nightmare, but I am doing better. The tinnitus is still there, and I recovered most of my hearing. I am trying everything..rest, niacin, multi-vitamins, zinc, B-12, vit E, low sodium diet, no sugar, low fat, staying well hydrated..ect..
I really want to go hiking while in San Fran, but I am unsure if I should take the chance, as the last thing I want to do is get worse!
I hope you are getting better. Keep us posted on how you are doing.
Take care
August 15th, 2007 at 11:57 pm
Hi everyone, Mary: I can understand your reluctance, Mary, after having that experience at altitude. I have “heard” about vigorous exercise and hearing loss and protecting the ear, but nothing conclusive. I believe each of us is the best “investigator” regarding our symptoms. If only there were some answers regarding adequate treatment!!
My hearing is the same: pretty much non-existent in the R ear, since June 19 or so. I’m really busy at my job and try to ignore it as much as possible. One problem I have is in restaurants or other “loud” places. One of my favorite pastimes, eating out, has become more of a challenge, what with having to say, “what”, “huh” etc.
Also I find I turn my head to face a speaker and if they don’t know why, they follow the direction I’m looking at!!
weird.
I think if you go hiking you can definitely get some healthy outdoor exercise without harming your ear. But that’s just me. I just hate to think about curtailing my favorite activities, esp. exercising outdoors!!
Let us know what you decide!
Take care everyone.
August 16th, 2007 at 10:00 pm
Gracie, thanks for the info on the other alternative. I’ve gotten a new computer and have had some difficulty getting things transferred over so have been offline for a while. I will definitely discuss this other possible alternative when I return to Emory in early fall. In the meantime, the “roaring” sound seems to have degrees of worsening and waning but never leaves. I’m glad to hear that flying didn’t really worsen the situation. It’s not funny but as I said before, I guess it’s better to laugh than cry but now I have this “crick” in my left neck and I think it’s from all the head turning I do to try to hear on the other side. Oh well, I did go to the dentist today and at least there everything was okay. He also does dental implants and I talked with him about the possible risks of the BAHA. He suggested to ask the infection rate of the physician that I consider having do the procedure before I go any further which I think is an excellent idea and since it is Emory, that info should be readily available. Anyway, everybody stay tough, would love to hear some success stories!
August 17th, 2007 at 8:24 pm
Hello Chrisitne,
For the past 2 days I have just been feeling bad; left ear felt slightly full, increased tinnitus, sore throat, red eye..body aches. I called my ENT today and said my hearing is decreased in my left ear (blah.. blah). I was told that their schedule was booked, and that no medications would be prescribed without first being seeing. Okay, I understand (even though I’ve seen this MD several times over the last 3 months). Regardless, I rushed home to start packing for my trip; but once I entered my garage I could really tell my hearing was decreased and that something really bad was going on. Subsequently, I went immediately to the urgent care center and was told I have Strep throat, low grade fever, and a bulging left TM. In additon the TM might rupture on the plane!
I am now thinking, what were the chances of this happening right before I get on a cross country flight (for a very important work related meeting)?
I am now sure that I have some sort of curse on me; as the last 5 months of my life have been filled issues that would only happen 1 in a million!!! For example, my ordeal started off 6 months ago with a freak chemical burn accident to my face, neck, chest, and hands (now the odds of this were probably greater than 1 in a million). Then I had neuro-sensory hearing loss (won’t even guess the odds of that).
Maybe while I am in San Fran, I can find someone who can remove curses! I am kidding, I believe in God and believe that He does not want me to go through this for “no reason”…I just wish I could see the reason.
The whole hearing issue is wearing me down. It controls my life..despite my numerous efforts not to let it.
The treatment prescribed: Medrol pack (steroids), Avelox, Afrin nasal spray, and Zrytec. I hope it can work in 12 hours.
Susan, maybe I will be able to report a success story in a couple of days.
August 17th, 2007 at 9:17 pm
Mary–good luck!! I traveled by plane every week for 10 years and once had an ear infection so bad I was grounded for 2 weeks. I cannot even imagine having to try to travel like that with this ear business we are going through. The discomfort and worry alone would be enough but then to not be able to thoroughly distinguish where sounds are coming from and interacting with strangers and trying to stay aware of all your surroundings is unimaginable. Please be very careful. I am fortunate that this happened after I left my consulting career. I know what you mean about this hearing issue does tend to consume a lot of energy and thought. I try to think that like other problems before me that I thought were monumental, there is always worse that could happen however it is human nature to turn inwards and give yourself a pity party occasionally. Like you said, it is truly a struggle to try to find the most positive outlook at times. Hopefully, your immediate problem will improve shortly. Good luck again on your trip.
August 18th, 2007 at 6:13 pm
Hello Susan,
Google Dr. Fukushima; he is located in Raleigh NC and is a world renowned neurosurgeon. He does a lot of surgery with acostic neuromas and I bet he does cochlear implants (I think that is what a BAHA is?). If you schedule a procedure at his Raleigh office versus Duke (where he also practices) you will not have a resident assisting which I am sure = less OR time and complications. Anyway, I have heard a lot people rave about him.
Thank you for your feedback last night. I decided to reschedule my flight until Monday. It was not worth the risk.
Take care
August 19th, 2007 at 12:56 am
Hi Mary, so sorry to hear about all the travails. Things have got to turn around for you, and soon!!
Just keep doing what is right for you. What you feel is right for you. Also this blog is here to share.
I’m getting an MRI tomorrow, ruling out anything more serious. Don’t know why it wasn’t ordered the first day I saw the MD.
Otherwise things are pretty much the same.
Take care,
August 20th, 2007 at 2:19 am
Hi Everyone,
I have some questions. I was diagnosed with SSHL about 10 days ago. After taking Prednisone for about 4 days my hearing got a little better for about 2 days. After that it went back down. Any Clues? Any Experience this?
August 20th, 2007 at 2:46 am
Hello Christine,
Thank you for your support. I will be thinking good thoughts your way today as you go for your MRI. If I recall it takes about 45 minutes and results were back within a day or two. If you need someone to write too, I will be here!
I am soon off to Ca. I am feeling better; just nervous.
Good luck,
Mary
August 21st, 2007 at 2:59 pm
Hi All..
It’s been six months since my single sided deafness. I’m still going from doctor to doctor trying to find a reason for my left sided SHL, although no one has an answer. I still have vertigo that came along with my hearing loss and the latest doctor put me on Dyazide. It’s a diuretic. So far it’s helped the vertigo somewhat and he said it might even help my hearing. I’m happy that this horrible spinning is finally coming to rest, but I really would like at least some of my hearing to come back so I can at least wear a hearing aid. I’m still considering the BAHA, but the most recent doctor said it’s a drastic measure and I should try a CROS hearing aid instead. Does anyone have any experience with this type of hearing aid? Any input would be greatly appreciated.
Mary
August 26th, 2007 at 11:20 pm
Has anyone who has lost hearing heard voices, humming, chanting, singing? Three years ago I lost all hearing in my left ear, some came back, seven weeks ago, I lost all hearing in my right ear, a tiny bit has returned but I don’t feel deaf because of the constant humming, singing, even piano playing. I have been told it is tinnitus, but it is not, I know the difference. I have been told so many different things by doctors, specialists and audiologists, all conflicting, it is hard to keep a positive attitude. I would be interested to know if I am not alone with this constant music/singing.
August 27th, 2007 at 8:41 am
hey every1
i am suffering from SSHL and now i am using hearing aid but i am not fully satisfied with it . i am suffering from this problem for last 10 years. i am just 25 years old but this problem is really like a big hurdle in my life. i want to express my feelings to others but usually when i try to interact with others i hardly understand what the says. i dont know what to do , i am really very much fed up with my life . please help me
August 27th, 2007 at 7:34 pm
Hello Gaurav,
I can imagine the frustration you must feel. I too have had problems with understanding people, sound sensitivity, and tinnitus. I have found that in times where I feel either angry, fed-up, or scared with my situation I will go outside and read, and I guess at my extreme worse…. I cry.
Do you think it would help if you went back to your physician to see if your hearing aid could be adjusted?
Please try to be strong. I think we all at one time or another have been pushed to what felt like our limit. I am sorry your are hurting, but again try to focus on what positive things you do have in your life and not on your hearing limitation. Trust me, you are not alone…I have had plenty of days that were awful, and I have appreciated the support that I have received from the caring people on this blog.
August 28th, 2007 at 8:26 am
hey marie,
i am glad that i got a reply from your side and thx for your support.
i am using cic (completely in canal ) hearing aid but i am still not fully satisfied with it and i also have read that behind the ear hearing aid ll provide more satisfaction than the cic . i am keen to know about the hearing aid which would provide me maximum benefit.
thanx and regards
gaurav
August 28th, 2007 at 10:55 pm
Hi Mary and everyone. Mary have you traveled? HOw are you doing?
Jenny, I don’t have as much “experience” with this as you but I definitely have been hearing noises that aren’t there! Sometimes I think my phone is ringing, or I hear bells. Very strange.
UPdate: I am also feeling a “vibration” on the non-hearing side, when I hear a loud or sudden noise, or when I raise my own voice. Kind of sounds like talking w/aluminum foil on your lips. Hard to explain.
Hope you are all feeling good. take care.
August 29th, 2007 at 7:20 pm
Hello Christine and everyone,
Thanks for asking about my trip. Yes, I did make it without any difficulty. My ears did fine on the plane and I used ear plugs. I am sure that a lot of my success was thanks to the steroids, antibiotics, nasal spray and antihistamine.
I am sorry to hear about the “vibration” you are experiencing. If I recall, you just started having problems in July. And what I have seen with my condition is that it has taken 5 months for my hearing to become somewhat stabilized. In addition my physician told me that nerve damage/irritation can take a long time to heal. So maybe you are still in the early stages of the healing process. Have you spoken to your ENT or physician about the tinnitus? I too have weird (at times very loud) noises in both ears, but these noises have become somewhat quieter over the last week.
Things I have done that I think have helped are: tons of vitamins, tons of sleep, medication at night to make me relax, no strenuous exercising (i.e., no running), unfortunately I have taken a lot of steroids…but I think they have helped..even with the tinnitus, and sleeping with my head elevated on about 3 pillows. It might be that I am starting to experience what a lot of people have already said, which is with time you get somewhat adjusted to the tinnitus. I am still hoping that it continues to get better. Please keep me posted on what your physician says and what you are doing that helps decrease (or increase) the tinnitus. Thanks again for checking on me!
PS: I hear bells, beeps, constant buzzing.
I have tried…but I can’t image what talking w/aluminum foil on your lips must sound like!
September 8th, 2007 at 5:29 pm
I woke with sudden hearing losthes in left ear 3 weeks ago. I am in the study with dr. Lee and have been given 60mg predisone for 14 days then taper. I take my last pill tomorrow. My biggest concern right now is my balance is still off and I am couch ridden most days. Sometimes I get a few good hours where I can clean around the house some. I have extreme fullness and tinnutiius . I can live with the hearing loss it is severe. I can’t live with how aggrivated my head gets from loud noises. and when more then one person is talking at a time. The big kicker is I work in a preschool! I’ve missed the first week of school and am so scared I will not able to return.
Will the unsteadiness, tiredness and loud noise irratiation go away?
September 9th, 2007 at 2:28 pm
I know exactly what Christine means about the aluminum foil on your lips. Never knew how to explain it, though, so sometimes I just don’t even try. It’s nice to know that when I can’t explain something someone else can do it for me. It could only be one of us! Thanks!
September 13th, 2007 at 1:23 am
Lynn,
I kind of went through the same thing you are experiencing right now. Unfortunately, the oral steroids did nothing so I moved to the steroid injections. I must say there has been some improvement with the injections directly into the eardrum. It’s just a mystery to me and others how all this happen suddenly within three days. I woke up one morning feeling really dizzy with a funny noise in my left ear, the second morning with a severe case of vertigo….equilibrium was off tremendously-I couldn’t walk without holding onto the walls and furniture, the third morning was even worse….bed ridden and fullness in the left hear like a unpressurized airplane. I was out of work for about 3 weeks, in and out of doctor’s offices, ENT’s, etc. I am a young City Administrator, involved in lots of meeting, in-service, panel discussions….you can’t imagine what I go through trying to make out what people are saying at times or trying to hear where that voice is coming from when someone is call my name from a distance. I find myself turning around almost in a complete circle trying to find out where that voice is coming from. Most of the time, I just try to position myself where I’m at the end of the table or where my right ear is to everyone. Yes, at time it can be frustrated but I think about people who are in a a condition far worse than mine. It’s been 3 months now and I am managing to the best of my abilites, but if there is any other medication or remedies out there that is working for any of you guys, please share. Good luck to all and my god bless you all in your times of hardships.
September 14th, 2007 at 9:00 pm
Hi everyone. I’ve been working a lot, and getting used to the tinnitus. I offer my support and understanding of each situation. Thank you for sharing.
I am wondering how Mary is doing, and Gracie, I know it’s hard to explain, but I do sometimes hear a static-y interpretation of noise in my ear, where before there was NOTHING. I tried putting an earpiece to my cell phone in my ear and I barely could hear a high pitch level of the ring of the call I was making.
Thanks for understanding!
And I totally know what Curt says about the origin of the sound and the positioning you have to make in a group setting.
My most difficult moments are in group settings in restaurants, (I HATE sitting in the middle, the whole right side of me is cut off from conversation), in an office where there’s lots of talking at the same time, in the car when I’m driving (it’s my right ear that’s affected so it’s dangerous sometimes if I really want to hear what the passenger is saying!).
And a different difficulty, is like now, for example, in my house, and the blasting sound of tinnitus that is not drowned out by wind or ambient sound.
I wish you all well, and you are not alone.
Take care.
September 15th, 2007 at 8:19 am
It’s been a long time since I posted, but by way of an update…
Yesterday around noon I started to notice increased and varying tinnitus. This does happen from time to time, but I also noticed the “full” feeling in the ear, like fluid or water was building up inside my ear. This is the same ear I had SSHL in last year, so naturally I’m a bit scared it’s going to take the rest of the hearing in that ear. Thankfully I have still not noticed any negative changes in my good ear.
I did manage to get in touch with the physician’s assistant from Johns Hopkins that I saw with my first episode of SSHL. She conferred with the physician I saw and they called in a 9 day (including taper) prednizone course. I’ll be following up in the next couple weeks with an audiogram. Last night my ability to hear out of my bad ear had definitely declined, but it seems more normal this morning. I’m keeping my fingers crossed.
Good luck to everyone.
September 18th, 2007 at 6:09 pm
Hello everyone,
Matt, I hope you are feeling better. Did your PA examine you or did he/she just prescribe steroids based on your report of ear fullness/decrease hearing? Did you have any other associated symptoms, like a sore throat? Did you receive any explanation as to what might be going on (i.e., medical diagnosis)?
I am sorry for the million and one questions, but you are receiving care at a top medical center and I am very interested in hearing what they have to say about your condition, as your condition seems to mimic the same condition a lot of us have.
Christine, thank you for checking on me. Overall I am doing about the same. I still have hissing in my ears. And I am still hopeful that my condition will continue to improve (and not get worse). Consequently, I might have to fly again (this time overseas); so here I ago again. What happens if I have hearing loss and I am in some foreign country. I know if I ask my ENT for a prescription of steroids for prophylaxis, the answer will be NO.
In regards to your situation, do you think the sounds that you are currently hearing are a sign that you might be regaining some of your hearing? I really believe that what many of us have is the consequence of nerve damage and that maybe this type of damage just takes awhile to heal (like up to 2 years). At least this is what I am praying to be the case. I am by no mean an expert, just a desperate sufferer of hearing problems. I do know that if your condition is causing you a lot of anxiety, (like it does for many of us) ask your physician to prescribe you something for anxiety—the medication can actually decease the tinnitus, as you know stress makes the noise so much worse. I never had any problems with anxiety until this happened, but the moment that I start having hearing loss and increase in tinnitus- I feel panicked. And, just like you, places like my house (like my bedroom) the tinnitus is so much more noticeable. I have a hard time understanding what people are saying when I watch TV—I know that sounds crazy.
Thank you to everyone for your support.
September 19th, 2007 at 9:20 pm
Hi again -
With my original episode, after being given a much shorter course of prednizone by MCV in Richmond than the studies suggest is therapeutic, I followed-up in person at Johns Hopkins the Monday following my initial episode in 2006. I did get on oral prednizone at 60mg / day from day 0 at least. I continued treatment at Johns Hopkins for my follow-ups, including 2 injections behind the eardrum and a number of audiograms in the months since. My hearing loss stabilized to what I gained back by Monday following loss, which was day 3.
My recent episode was something I perceived and reported by phone to the physician’s assistant at Johns Hopkins. Based on a phone conversation with me and her subsequent conversation with the physician, the PA/physician prescribed 40mg prednizone for 5 days, followed by 20mg for 2 days and finally 10mg for 2 days. The PA suggested I find an audiogram over the weekend if possible, but I was not able to get one. Johns Hopkins will be following up with me in the near future to set one up at their facility.
A couple of times since my recent episode, I have felt the hearing was improving. Mostly this was a result of the tinnitus decreasing, I think. An audiogram will tell the truth, but I have definitely experienced periods (several hours at minimum) of perceived hearing loss and the sensation of fullness in the ear.
I’ll update if/when I learn more or get an audiogram.
The PA told me that SSHL was generally not episodic and that I was tested for a number of autoimmune diseases last year. She did suggest Rameers (sic) disease as a possibility, but seemed to think the testing would have uncovered it if I had it.
September 20th, 2007 at 4:48 am
Matt,
What is Rameers disease (I have googled, but can’t find anything) is it an autoimmune disease?
Also based on what you have described, I assume that you did not have a sore throat/fever, anything that could have pointed to a middle ear infection versus inner ear.
Also, if Rammeers disease is autoimmune, and you have gone so long without any problems, I am wondering then if autoimmune diseases of the ear can go into remission (for time peroids of year)?
I have point blank asked my ENT this question…what if I have an auotimmune hearing disease..can it go into remission; but I never get a straight answer.
Please, I understand that you might not have any answers for me. I am very glad to hear that you have improved with the steroids. I am also glad that your tinnitus has improved. Lastly, was it just one ear or was it bilateral?
Thanks for your help!
September 20th, 2007 at 6:15 am
Real quick…
I have no idea what Rameers (sic) is. I do not have a good spelling for it and can find nothing online. The way the PA discussed it with me, I believe it is the name of an autoimmune disease that I need a correct spelling for.
There were no other symptoms associated with the increased tinnitus, perceived loss of hearing and fullness in the ear.
This was only the ear originally affected by SSHL and was not bilateral.
October 2nd, 2007 at 12:56 am
I have the same story. Lost right ear hearing 6 days ago. Am taking steroids and hoping to get shots on Wed. I have a few questions:
- Does the feeling of fullness ever go away?
- Has anyone’s md specifically said that exercise can make it worse?
- Does anyone have the TransEar?
Thanks!
October 4th, 2007 at 1:07 am
Hi everyone and Kali: Welcome to this group, it is unfortunate that you have reason to join but I have found a lot of support and understanding here.
The feeling of fullness for me, is pretty much always there. It is less noticeable at times, but most of the time I have that sensation.
my md, who I can’t say that I highly recommend, has said nothing about exercise making it worse. I’ve read such things, but not heard directly. I think others, like Mary, might have more insight.
I don’t know anything about TransEar.
I hope you find comfort and definitely do the shots and the prednisone. I had one shot and may go back for another. I started out in June w/NOTHING out of my R ear, and now have some static-y sensation coming from my ear.
take care,
October 4th, 2007 at 5:08 am
Hello everyone and Kali,
I have heard “sure go ahead an exercise”, and I have also been told by another physician do not do any exerice that is jarring to your head or which is strenuous. Since I do not want to do anything that could make this situation worse, and I think it makes sense not to do anything that would make my auditory system more agitated; I walk (at times vigorous).
However, I have no idea what the mechanism is for my hearing trouble; I have just tried to observe over the last 6-7 months what makes it worse and what helps.
I hope you are doing well with the steroids. May be with the type of hearing problems you are having, exercise would be fine. I know the mental benefit from exercise is huge. Good luck (you are not alone) and keep us posted on your condition.
October 6th, 2007 at 2:17 am
Thanks for the quick responses!
I got a steroid shot in my ear and regained a tiny bit of hearing. I plan to go back for 2 more shots 1 week apart. Has anybody tried hyperbaric oxygen therapy?
“A review of hyperbaric oxygen therapy found a beneficial effect, especially if therapy was instituted within 2-6 weeks of the onset of the hearing loss. Fifty percent of patients improved by 20 decibels. If therapy was delayed, less improvement was found, with no beneficial effect for delays of longer than 3 months.” http://www.emedicine.com/ent/topic227.htm
October 6th, 2007 at 5:15 am
I did ask my physician about going into a hyperbaric chamber (as I also had a facial burn), but I only got a smile and a chuckle. I think it is worth asking your physician, let us know if you go.
Thanks for the link to the article; I enjoyed reading it.
Is anyone taking vitamins? If so, what kind?
October 6th, 2007 at 1:50 pm
Hi Mary,
I will ask my doc about Hyperbaric next week.
I am taking 400IU of gamma tocopherol E with a meal of Whole Grain Total and full fat milk (vit E needs dietary fat to be absorbed) twice per day. Also adding 1 tbsp of wheat germ oil to my morning smoothie.
I am also taking antioxidant with Vitamin A, C, E & Magnesium.
Worth a try!
VITAMIN E:
“…there is some preliminary evidence to suggest that antioxidants may help treat the disease. Previous research has shown that superoxide anion radicals (O2-) appear in the inner ear of experimental animals after damage caused by noise-induced trauma, administration of ototoxic drugs (those that damage the ears), and inflammatory disease. To find out whether antioxidants may have a restorative or protective role in the inner ear, researchers from the Technion-Israel Institute of Technology in Haifa, Israel, randomly divided 66 patients, with an average age of 41, with sudden hearing loss into two groups. The basic treatment of both groups was identical (including bed rest and steroids) except for the addition of 800 mg of vitamin E per day taken by the study group. The severity of hearing loss was only marginally significant in the rate of recovery but the success of treatment, defined as improvement of 75 per cent or more at the time of discharge, was significantly better in the study group. The recovery rate of more than 75 per cent was achieved in 26 (more than three quarters) patients in the vitamin E group compared with 15 (45 per cent) patients in the control group. The antioxidant properties of vitamin E have been known for many years. Since its discovery, vitamin E has been recognized as an essential factor in neurologic function. It has also been associated with prevention of cardiovascular diseases, reduction of risk of cancer, and functioning of the immune system.”
http://www.israel21c.org/bin/en.jsp?enPage=BlankPage&enDisplay=view&enDispWhat=object&enDispWho=Articles%5El787&enZone=Health&enVersion=0
ENHANCED VITAMIN E ABSORPTION FROM CEREAL:
“In it, scientists tested the results of four different types of breakfasts: a pill of 400 I.U. of vitamin E with skim milk; a serving of a wheat breakfast cereal fortified with 30 I.U. of vitamin E; a serving of wheat breakfast cereal fortified with 400 I.U. of vitamin E; and a serving of wheat breakfast cereal with a pill of 400 I.U. vitamin E taken separately.
The pill of 400 I.U. vitamin E taken with just a glass of milk, in theory, should have provided more than 13 times the RDA of this nutrient. But, in fact, it raised the level of new vitamin E in the blood by only 3 percent.
By comparison, the cereal fortified with 30 I.U. vitamin E raised the blood plasma level of new vitamin E five times higher than that, and the cereal fortified with 400 I.U. raised the new blood plasma level 30 times higher.
The effect of a pill of 400 I.U. taken with a serving of plain wheat cereal was inconsistent; some participants had a significant increase in blood plasma levels of vitamin E, others almost none. ‘This study clearly showed that applying vitamin E onto a grain cereal provided a huge and consistent increase in its bioavailability,’ said Scott Leonard, an LPI research assistant who conducted the study. ‘Even 30 I.U., the RDA for this vitamin, produced a large increase in new blood plasma levels.’ ”
http://www.medicalnewstoday.com/articles/5361.php
ANTIOXIDANTS & HEARING LOSS:
“Free radical formation in the cochlea plays a key role in the development of noise-induced hearing loss (NIHL). The amount, distribution, and time course of free radical formation have been defined, including a clinically significant formation of both reactive oxygen species and reactive nitrogen species 7–10 days after noise exposure. Reduction in cochlear blood flow as a result of free radical formation has also been described. Here we report that the antioxidant agents vitamins A, C, and E act in synergy with magnesium to effectively prevent noise-induced trauma. Neither the antioxidant agents nor the magnesium reliably reduced NIHL or sensory cell death with the doses we used when these agents were delivered alone. In combination, however, they were highly effective in reducing both hearing loss and cell death even with treatment initiated just 1 h before noise exposure. This study supports roles for both free radical formation and noise-induced vasoconstriction in the onset and progression of NIHL. Identification of this safe and effective antioxidant intervention that attenuates NIHL provides a compelling rationale for human trials in which free radical scavengers are used to eliminate this single major cause of acquired hearing loss.”
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T38-4N3GFGK-1&_user=10&_coverDate=02%2F20%2F2007&_rdoc=57&_fmt=summary&_orig=browse&_srch=doc-info%28%23toc%234940%239999%23999999999%2399999%23FLA%23display%23Articles%29&_cdi=4940&_sort=d&_docanchor=&view=c&_ct=81&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=5d4de9e2471217400ef049f90a10c2f1
October 7th, 2007 at 4:43 am
Hello Kali and everyone,
Thanks for the information, you have done a lot of research. I am taking everything, but the Mg (and I will get some this week). I don’t know if this does any good, but I take (on an empty stomach) 500 mg of niacin once a day. This causes a lot of blood flow to my ears (and face/chest). I believe this is good, as I have read that one problem could be decrease blood flow to certain structures in the inner ear.
Does anyone with tinnitus notice that when you yawn, the tinnitus gets a lot louder?
October 7th, 2007 at 1:05 pm
Hi everybody:
It has been since April 25th when I first corresponded with you. It was very interesting to read all of your updates and also the new stories. I would like to update you on me and share what I am doing and what is going on. My first onset was April 1st, 2007. I won’t repeat the whole story as it is under April 25th. I see doctors in Gainesville Florida. After I took the steriods I was given Alegra and Nasacord, as I also have allergies. I kept going back for hearing tests. I regained some of the hearing back. I was scheduled to fly June 2nd. A lot of concern because this was really new. I had a different test done to make sure there was no fluid built up. It was confirmed that there was not. The doctors put me on a water pill twice a day, which I still take to this day. This is to make sure the fluid stays away from the innner ear. I was cleared to fly. I was told to use the Alegra, Nasacord, use Afrin nasal spray and take sudafed to fly. I was also told to drink water while desending so I would keep so swallowing. We flew to Cabo, no direct flights so it included 4 flights. I had no problem. I have regained enough of my hearing so that I can hold a phone up to my bad ear and hear what the person is saying, but it is very faint. I get confused as to what direction the sounds are coming from and I don’t like crowded, loud spaces. This has been very difficult for me, as we have season tickets to the Gator games. I wear ear plugs. I am still able to hear the broad casting, but most of the loud crowd noises are cut out. I have been told to stay away from caffine and no added salt. I was told at the beginning not to do any exercise as if there was a “tear”, it would not heal and would cause further damage. I have since been cleared to exercise. I feel the fullness all the time, this has not gone away. My ocean sounds have gotten much better. At night we run a humidifier which helps to add sound to the room. One thing I do have which I have not read that anyone else has is a clicking’popping noice when a swallow or move my jaw. I asked my doctor and he said it was my eustachian tube moving. He said it wasn’t a bad thing. Really no explanation for it, I guess I have gotten used to it. Anyway, I hope evreyone is doing the best that can be expected. I will keep you posted as I go back to the doctor next month.
October 8th, 2007 at 9:08 pm
I wrote in August about hearing chanting/singing/piano all the time since I lost the hearing in my other ear. I spoke to 7 audiologists, 4 doctors, 1 specialist only to be greeted with rolled eyes, comments like had I suffered any psycotic episodes.
Finally, after contacting the tinnitus association (in Australia) I have an answer, I am not going insane, it is a rare form of tinnitus called musical tinnitus, it is the brain trying to compensate for the loss of hearing. It is still difficult with the noise all the time but knowing what it is helps.
I find most people kind and understanding but some treat me differently which is their ignorance more than anything.
Best of luck to you all.
October 14th, 2007 at 6:17 pm
I am so happy to find this site. I do not have SSHL, but my husband does. A week ago tomorrow he suddenly lost all hearing in his left ear while he was getting dressed. Being himself, he didn’t tell me for two days. [We had a similar situation when he developed tears in a retina several years ago.] On Thursday he saw the nurse practitioner at his internist’s office and was immediately referred to an otologist. We are fortunate that we live near a major teaching hospital and medical center.
He had an MRI on Friday; and, of course, we are nervous until we hear the results of that. He is on an oral steroid and Valtrex and will have a steroid injection in his ear on Tuesday. He has been told that this course of treatment gives him a 40% chance of some improvement.
My husband is an attorney and an amateur musician. He has already had encouraging words from a legal colleague who has had no hearing in one ear since birth. He has been having difficulty with music, which has brought me to tears, but he was able to enjoy an opera we attended last night to some extent. The other day he told me that when he practices French horn it sounds screechy; but he has been practicing this afternoon and said that it is better. His playing sounds as usual to me. He has been passionate about music his whole life, and it is the possibility of his losing that part of his life that hurts me the most.
He has had no vertigo but has tinnitus.
My husband has controlled hypertension and severe arthritis in one ankle. He has had asthma his entire life and faces surgery in the next few years for a cataract caused by the laser surgery that repaired multiple tears in his retina. This seems like just too much! On the other hand, only one ear is affected, and, as several of you have wisely said, things could be worse.
I can tell you this. Your family and friends are hurting for you.
October 21st, 2007 at 7:40 pm
Hello Everyone. I can empathize with everyone on this forum as I am closing in on 3 years since I had sudden massive hearing loss accompanied by roaring tinnitus in my left ear. My particular case is compounded by the fact that I make my living as a composer. I went through most everything that everyone here has - panic, depression, fear of social settings (not being able to discern what’s always being said), fear of talking on the telephone, etc.
Within a day of “the event” I went to see an ENT who began a course of prednisone and sent me to specialists at a local Medical School. After many tests I was never definitively diagnosed (could be Meniere’s, maybe not). I was put on a water pill, told to reduce salt intake, cut out caffeine, all the normal stuff. After about 6 months I went to the House Institute in LA. Amazingly, on my way there my hearing suddenly cleared. This was mostly good news (great to have my hearing mostly back), but the bad part was that there wasn’t much for them to tell me to do as I tested pretty close to normal. Of course, a few weeks later my symptoms returned as bad as ever.
Months later I realized that when I was on the way to my appointment I had tried to induce myself to relax. I tend to internalize a lot of stress, and my job is chock full of impossible to meet deadlines. After another 6 months of severe tinnitus on a whim I tried again to induce myself to relax, and once again my hearing improved significantly. This time, I began to put 2 and 2 together, realizing that there might be a connection between stress and my hearing problems. From that point on, I’ve made a major effort to relax, and it has helped me tremendously.
That managed to get me through about a year and a half in pretty good shape - not perfect, but well enough to feel confident in my work, until about 4 months ago I went through a very stressful week. Suddenly, my hearing crashed to one of the worst episodes I’d had since my problems began. After a slow recovery (things eventually getting back to an acceptable level) I went back to my ENT and told him my theory (stress as a possible cause, along with figuring out that I’ve probably had TMJ for decades but had written it off as nothing out of the ordinary). He decided to give me a small number of Valium to try to help me relax better……
WOW! After 4 days of taking a small dose (2mg once a day) my hearing returned to absolutely perfect - as good as it’s ever been. As a test, I then stopped taking the pills, and after 4 days off my hearing is back to medium good (not horrible, but mild tinnitus and the feeling of fullness has returned). I understand that my testing method is far from scientific, but I truly believe I’ve found the root of my problem.
Now, I know I can’t take valium every day or else I will become addicted (even with that low of a dose), but at least in my case I think I might have arrived at the cause of my problem and a possible solution. I plan on looking into some sort of bio-feedback or hypnosis to help me learn to relax, along with using the occasional valium during important times (recording sessions mainly).
It’s important for everyone to understand that there are many causes of SSHL, and that my situation is not the same as many of you. However, I thought I needed to share my story in case there are others out there who might have the same pattern and might be helped by my experiences.
I also wanted to throw out there that I exercise 6 days a week, climb 11,000 foot mountains, and fly about 30 times a year, and I believe that at least in my case none of those events help or hurt my hearing.
I truly feel for all of you who are afflicted, as I know that it’s been the most devastating event of my life, but please don’t give up hope. I wish you all the best.
November 4th, 2007 at 5:47 pm
Hi everyone! Nice to see all the support continues. Interesting to read your stories.
I had an experience the other day: ran into some old “friends” and when I told them about my hearing they were shocked (as most people are). when they asked what caused it, I said the most likely answer was a virus. One of the people I was talking to darted away from me at that second!! I said, “it’s not contagious!!”
kind of freaked everyone out.
have you had this sort of reaction from people?
take care, and I send you my best wishes to feel good in spite of the suffering
November 8th, 2007 at 11:15 pm
Christine, that is awful, no one seems to know what causes hearing loss, as I said most people are kind, some not so. some people think because I can’t hear them that I am automatically stupid, huge to overcome but I will and I refuse to become a victim. There are times I feel totally isolated and would prefer not to mix with people but I force myself and cope as best as I can.
November 11th, 2007 at 7:05 pm
Hi to everyone, I haven’t posted in a while but it is nice to see the stories and support continue. Well it has been six months now since the day my hearing began to diminish. Six weeks ago my local ENT referred me to an inner ear specialist out of town. Upon arriving, I was very optimistic…hoping that someone could tell me something positive about my hearing. The audiologist tested my hearing first….I must say I was even suprised about how much hearing I had gained. I dred going through the hearing exams - mainly because I’ve probably been through them at a minimum of twelve times. But this time I could hear just about everything in that left ear. The voice recognition had improved greatly; but there is still that constant tinnitus but it is tolerable. In fact, I don’t notice it until it’s quiet or if I am in deep thought. Can I live with it the rest of my life….well right now I don’t really have a choice now do I? The doctor assured me that my local ENT had done everything medically possible and that he wouldn’t have done anything differently in regards to the oral steroids and the injections directly in the ear. He said my heairng is at 55% which is a tremendous increase from my original charts that stated that the left ear was totally dead. I still say, had I known what exactly was happening to me initially that first morning I had awakend with extreme vertigo and funny sensation in that left ear….I would have immediately gone to my ENT and started the treatment then. It wasn’t until that third day when I got a chance to see an ENT. But hindsight is always 20/20. I asked the specialist if he had ever seen cases like mine to have the same thing happen to the good ear. In all his years, he said he has never seen that happen and the chances of that were very, very, slim. That was also good news to hear; he also said that I should invest in wearing a hearing aid- one that fits in the canal. He stated that it would decrease the “white noice” of the tinnitus as well. He advised that I see my ENT and get the ball rolling in regards to the hearing aid. I suffered from allergies and terrible sinnitus prior to my suddent hearing loss; he told me that this was caused by a viral infection. I’ve come to grips with my SSHL and now appreciate life even more. As always my prayers are with all of you and I hope the support continues. With all the advancement in medicine and science I hope eventually someone will come up with some answers.
November 12th, 2007 at 6:38 pm
Curt, what inspirational stuff, I was told if your hearing doesn’t return in three months to forget it. My left ear lost all sound three years ago, a small amount returned, the last time it was tested showed a slight improvement which is wonderful, it goes to show the medical profession really don’t know very much about hearing loss. I think to stay postive no matter how difficult really does help. My right ear has very little hearing, this was lost three months ago but I am not giving up.
God bless you all.
November 19th, 2007 at 9:28 pm
Hi everyone, I am new here. Last year I had laborynthitis on the right ear,
this year I lost hearing from 4000HErtz up, and tinnitus which has gotten a little bit more tolerable. I take 1000mcg B-12, 30mg CoQ10, a diuretic , and10mg manganese. Hearing loss is supposed to be due to age, ( I am 52). This week my left ear developed tinnitus as well. I have no idea what else could be the reason, although the hearing loss and tinnitus started with a sinus infection which since then has disappeared. I did some research and I am flying to Germany next February. The physician I am seeing is a MD with specialty in Laser treatments. I am hopeful, he has a rather high success rate (approx. 80%) if anyone is interested let me know and I provide further details with respect to his rather large website which is also posted in English.
November 21st, 2007 at 10:43 pm
Hans, I would be interested in any information you may have. Are you saying that this physician is using a type of laser therapy for sudden hearing loss? Please advise. Thanks
November 22nd, 2007 at 12:17 pm
Susan, I do not know whether or not I can publish this physicians website here. How can we contact each other without publishing our phone number or e-mail address on this board? I will gladly help you.
November 22nd, 2007 at 11:28 pm
I too have SSHL, and I managed to get to an ENT on the third day. I have had an MRI,which was negative, and have since gone to a specialist at the Ear Institute in my area. Even after the first round of oral steroids, my hearing loss increased. After a second appointment with the ear specialist, he has put me on another strong oral tablet steroid therapy and a diuretic. I have excessive fluid in the affected left ear, so the diuretic is supposed to remedy that.
Oddly, I have fullness in the left ear, fluctuating ability to hear, significant speech recognition loss, horrific tinnitus, (now I know why Vincent Van Gogh cut off his ear!), and yet I do not have any dizziness or vertigo issues. My specialist performed a test to reveal the fluid in the ear. I believe this condition is referred to as “endolymphatic hydrops.”
This whole ordeal has been within the last month of November. My specialist says I present with all the symptoms of Minere’s disease, but I have not experienced the balance/vestibular balance problems.
Anyone had this particular situation? I am just at a loss like all of you to cope with this life changing challenge. I realize this pales in comparison to the diagnosis of cancer or the loss of limbs our soldiers face. I’m not looking for pity as I tell my friends, but for their prayers, support, and hope.
I also cannot believe that the tinnitus cannot be treated and that one must just live with it! Mine sounds as if a leaf blower is roaring constantly i nmy left ear.
Mostly, I am, as many of you are from what I have read here, frustrated at how little the medical world knows about SSHL and the “hit or miss” treatments, but mainly at how most people have no idea of what I am experiencing! I myself had never heard of SSHL before I experienced it, and I had only heard of tinnitus as a challenging word in a spelling bee!
Having this last month of life with SSHL makes me realize how very much we take our hearing for granted! I have developed a whole new appreciation and deepened compassion for hearing impaired people.
God willing that I should recover my hearing, you can bet I’ll be dancin’ in the streets… with earplugs to protect my hearing from the loud music, however!
I appreciate this forum for allowing me to share my SSHL experience and vent my personal vexation about my SSHL.
November 24th, 2007 at 5:10 pm
Hans, you can contact me at CapCad00@aol.com. Thanks!
November 24th, 2007 at 8:51 pm
I have a rare form of tinnitus which is almost unbearable to live with at times, it is voices chanting constantly. Doctors/specialists looked at me is disbelief asking if I had had psycotic episodes. Finally I contacted the tinnitus association, if you have one near you, they are extemely kind and understanding, I am in Australia.
November 25th, 2007 at 5:19 pm
Susan,
Look into the in-box of the e-mail address you gave me. You have mail.
November 27th, 2007 at 6:48 am
Hi there this is my first posting.
Thanks Matt for starting this dialogue with your story. And while I wouldn’t wish SSHL on anyone it is comforting to know that my experience isn’t as isolated as what I imagined.
In October 2006 on a Sunday afternoon I was sitting with friends at lunch when I suddenly experienced fullness of the left ear and deafness. By the time I got home from lunch I was very unbalanced and nauseous. It wasn’t until I put the telephone up to my left ear that I realised that my hearing loss was isolated to my left ear. Prior to this day, I had been well and had been training daily so my fitness level was good. I also have had no previous hearing loss problems.
I got in to see an ENT on the Tuesday morning, thinking that I had a swimmer’s ear. In that consultation, the ENT told me that he thought it was idiopathic SSHL; that it was a rare condition and unlikely that my hearing would return as I have such profound loss, however the tinnitus may subside. He sent me for blood tests, hearing tests, CT and MRI to exclude other possibilities and commenced me on steriod treatment immediately.
I can not describe how challenging this last year has been, just reading some of your messages has validated my feelings of anxiety and sadness and reminded me that I have been through a traumatic event. While I have good family and friendship support, as I still look the same, am a healthy 35 yo and people can’t hear the ringing I hear 24/7, it is natural that they forget. I actually take it as a compliment that they forget, as it means that I have adjusted well.
So it is now over a year later. I have had no improvement in hearing and no change, except that it is amazing how quickly the body adapts to sudden hearing loss. I have profound deafness in my left ear, such is the extent that a hearing aid is useless and constant tinnitus in this ear.
For the first 6 months after losing my hearing, I had difficultly falling asleep due to anxiety. This was primarily due to not having a reason as to why I lost my hearing suddenly. Don’t get me wrong, I am very pleased that all my tests were negative, however I’ve been left wondering that if I could suddenly lose my hearing in my left ear, what is stopping my hearing being lost in my right ear. Another 6 months down the track and while my anxiety has settled somewhat, I still experience moments of panic. My right ear is now very precious!
It’s been a bit of an emotional rollercoaster to say the least, and it has affected my social life quite significantly, where I avoid crowded venues or group gatherings where there will be a lot of background noise. I think this last 12 months I’ve been adjusting emotionally and physically and it is only now that I feel I can start to try and uncover what has happened.
About 2 months prior to my hearing loss, I started to experience muscular headaches at the back of my head and just a general fatigue of my neck. I have also had some dental and posture work over the last year, and these practitioners from different disciplines detected that my jaw was not aligned. This in itself can cause headaches. So this month I went off to see a TMJ specialist, who confirmed that my jaw is not aligned and I require orothics. He has suggested that this can cause headaches I describe and hearing loss! He has also recommended that I see an atlas chiropractor.
So I commence on this new journey. After this time I don’t expect my hearing to return, however I am certain this is me protecting myself from further grief. However I am hopeful that I may be able to gather an understanding as to why I suddenly lost my hearing, and also uncover the impact of my jaw problems on my overall wellbeing.
I’d like to know if anyone has heard of TMJ problems and hearing loss?
I was also wondering about the affect of stress on hearing loss. 2006 was a particularly stressful year for me. After having getting no answers from the medical field I am now not shy about putting this question out there.
I’d also like to thank you all for sharing your experiences. Given that there is very little research in this area, our personal stories may turn out to be very benefical to each other.
I am happy to keep you posted of the outcomes of my TMJ and neck treatment.
Thanks again
November 27th, 2007 at 11:30 am
Maddie, I agree with you that the stress level in one’s life can be a factor in SSHL. My tinnitus soars when I am stressed, so I’m sure that the stressful issues of life can bring on hearing loss.
I also had two molars and one wisdom tooth extracted, along a crown inserted on another tooth… all in the year before my SSHL. I tend to grind my teeth at night, and my jaw goes “pop” more than the weasel sometimes when I eat! I may need to check out the TMJ factor. I never thought of dental work as contributing to my SSHL.
Yesterday I had another check up with my ear specialist, and even after round two with oral steroids, my hearing in my affected left ear has decreased. The next step is to place a wick in my ear canal so that I can administer steroid drops three times daily directly to the middle and inner ear without the systemic side effects of oral tablets.
I pray that this will bring some good results… as in maybe a little Christmas miracle for me! It would truly be joyful to hear the Christmas bells again if I can get back the beautiful gift of hearing!
Thanks to everyone for making me feel so comforted by knowing that I am not alone in this personal battle of mine with this confounded SSHL. One way or another, we shall all overcome it or learn coping skills not to let it rule our lives.
Sid
November 27th, 2007 at 4:10 pm
Hi, this is Carol. I have written several times before and I like to keep in touch and read everyone’s updates. Also, welcome to the newcomers. I have read Composer, Maddie and Sid in regards to the TMJ. I know we are continuing to try to see what we all may have in common. I have suffered from TMJ for years. I have had bilateral TMJ surgery and another surgery on my left side. These surgeries were years ago but I continue to be bothered by the pain and clicking of the joint. I also went through some extensive dental work a year and a half ago. Don’t know if it matters, but very interesting. I am going back to the doctor 12/11 and I will see what he thinks. We never discussed this before.
November 28th, 2007 at 4:20 am
Hi there
Carol and Sid I am also find it interesting that there are 4 of us with some TMJ issues and I am trying very hard not to get my hopes up too much that we may very well be onto something.
After my initial consults with the TMJ specialist and chiro, this is the first time I feel hopeful that I might at least discover why I lost my hearing. It is also just making a lot of sense to me. There just seems to be too much going on in my neck and jaw area which are in such close proximity to my ear to be considered just a coincidence.
Also 2 weeks prior to losing my hearing I finished root canal treatment which has required a crown.
Sid all the best with the next round of treatment. I hope it goes well for you. And Carol I would be very interested to hear what your doctor says. My own ENT never mentioned any possible relationship between my hearing loss with TMJ issues. To be fair though it wasn’t something I myself realised I had a problem with until recently. It wasn’t until my dentist and then the posture practitioner noticed that my jaw wasn’t aligned, that I realised that my other symptoms could be related to this.
Composer it would be great if you could expand on some of your TMJ issues if you are still online.
November 29th, 2007 at 2:59 am
Wow, it’s really amazing to read your stories. My heart goes out to you all.
Five days after graduation from my master’s program, I lost hearing in my R ear. I’ve posted above more in detail. it is much like you all describe, and after 6 months I only have the constant rushing sound as my reminder.
So I’ve been thinking a lot about stress as a factor in this circumstance. I saw a 2nd ENT, very experienced, who shied away from the herpes virus theory and stuck to the purely idiopathic scenario. He also dismissed stress as any influence, but I feel differently.
He recommended avoiding caffeine (damn!), salt and of course loud noises. I’m not so much into seeking any results, I’ve sort of resigned myself to this new adjustment. But it’s hard! I feel foolish at times having to ask for repeats of what people are saying, and no more Ipods!
it is truly a relief to be able to post here and to know, that unfortunately, there are others who can relate. I really wish you peace and healing.
take care,
November 29th, 2007 at 3:45 pm
Maddie: I will certainly keep you and everyone else posted. I also noticed in reading back through everyone’s stories that Matt’s original hearing loss test results (I clicked on the link at the top of the page)showed cyst material near the right TM joint, also same side as the affected ear. I also have neck problems and have seen chiro’s in the past. I guess right now I’m just trying to put a lot together. I would sure like to know if there is something to this as I have TMJ problems on both sides and I am so protective of my good ear.
November 29th, 2007 at 10:51 pm
Hi everyone!
So interesting to read over latest posts. I had complete left sided hearing loss Memorial Day this year (just woke up and had fullness feeling and deafness). Went through TM injections of steroids at Emory with no improvement. I have tinnitus and sometimes I have a faint distant clicking noise in it. Of interest is that I too have TMJ and although I am 54 now, at 30 I had braces because of severe TMJ after trying bite plane therapy. Although the headaches improved I still have pronounced clicking and evidence of grinding my teeth at night. One must think there has to be some relationship to this. Of interest is that I recently heard a trivia fact that chiropractic medicine recently had an anniversary of discovery and the very first chiropractic maneuver documented resulted in recovery of hearing in a patient with an adjustment. Of course that was a long time ago obviously and this was a trivia fact but it does make one wander. For those of us with this problem, if you are like me, you have gone over a million scenarios of what must have caused this and I pray every night that I still have hearing in my right ear in the morning. Also, the stress factor makes sense as I too had a bad year with my sister and brother-in-law dying unexpectedly this past year. I personally feel that the study the NIH has going on is not very serious about this problem as the majority of folks I have heard from that have experienced this have not benefitted from much of anything. The head ENT at Emory was like well, we haven’t cracked the code on this and he said he stated he saw at least one new case a week but the medical community doesn’t seem very concerned, at least from my experience. Anyway, enough about frustration, you all know that drill but I did want to share that TMJ has been a major focus of treatment for me in the past. You just have to wonder exactly what would trigger the auditory nerve just dying suddenly as it seems to have done in my case, have never experienced any improvement since I woke up with it. Just one of the many thoughts that race through your head about this. This site has truly been inspirational and made me realize that I am not crazy and this isn’t just my imagination with all these sounds. Like I’ve said, I can truly understand the phrase “deafening silence”. Take care!
November 30th, 2007 at 8:38 am
Hi there
I have nothing new to report really. It is just so good to be able to chat with people who have experienced the frightening SSHL.
I had my first treatment with the atlas chiro today. It was all a little bit scary given that I have never been to a chiro before, and to my surprise very gentle. I will get some information from him regarding what type of chiro he is and post it on Monday. The truth be known, I can’t spell it! It’s atlas …… The corrections are very gentle and made through the vibrations produced by this machine. Sorry yes a very inadequate explanation, wait for Monday’s update.
I see the TMJ specialist on the 18th Dec and get measured up for orthotics (Splints), which I will have to wear 24/7 for 3 months. Apparently this will relax all the muscles in my jaw very quickly to enable some realignment.
I won’t get the splints until late January as they have to be sent away to be made in the US. So it will be some time before I see the outcome of these.
Both the TMJ and chiro are offering no guarantees and don’t want to raise my hopes, but at least they are hopeful in uncovering what has happened and have not dismissed the the slightest possibility of some hearing improvement.
Yes Susan I have also discovered that SSHL certainly can make you question your mental health. SSHL has made me less trusting of my body, and way too observant of my sensations.
When I first lost my hearing, I thought I’d go crazy with the tinnitus. Now it doesn’t bother me that much, I can accept that. Sometimes I wonder if I could stand how quiet it would be without it! Amazing how you can adapt! I am just so very hypervigilant about my good ear, and very tuned into noticing any changes with it. I guess that’s natural though.
Chat soon.
Cheers
Maddie
December 11th, 2007 at 9:16 am
I’m a two-day-old SHLer (ssssssh-ler). Right ear. Significant hearing loss in low ranges. Mild tinnitus.
My specialist ordered blood tests, MRI, and a course of Prednisone. Specialist confessed that SHL is a mystery, that I probably would not get any better, but that there were rare cases of spontaneous remission.
In reading your posts, I see some commonalities:
– too much salt
– too much stress
– jaw/tooth problems
– too much sound (note our composer and musician)
– too much caffiene
Perhaps the world is simply too much with us and our fragile ear mechanisms are bellweathers telling us to slow down.
Certainly we need to keep on sharing and learning and fighting for our own care, but it seems to me we must also seek peace and quiet, rest and silence. At some level, we need let go and accept.
Finally, what can we learn from this experience. What if it’s a gift?
Best,
Gale
December 12th, 2007 at 10:21 am
I have been using a BI-PAP (like a C-PAP) machine for several years now. Quite a number of postings suggest there may be a connection between use of C-PAP machines (used mostly to curb snoring) and SSHL.
Anyone else use C-PAP? And what is your story?
Gale
December 22nd, 2007 at 12:31 pm
Hello everyone,
About a month ago November 15th I had ISSHL in my left ear. I noticed a jingling sound and it progressively got worse over the course of the day. I went to my primary care physician and he stated that it was due to allergies and put me on Nasanex. As the week went on and the ringing became deafening. I went to two more general practitioners over the course of the week all telling me different things from a punctured ear drum to an ear infection. I finally made it to an ENT that following Monday where I was diagnosed with Sudden hearing loss. I was floored. The ringing was terrible and was putting me over the edge. He prescribed prednisone for 10 days. Over the past month I have lived in a state of panic. The ENT did an MRI which came back negative but he did not do blood work. I just received a second opinion and he stated that he agreed with the first doctor and SHL diagnosis. He put me on an antiviral and I just went for blood work.
The whole experience has been life changing for me. I only have about a 10% hearing loss in my left ear but the tinnitus is incredibly loud. I cannot focus on anything else. I feel like I am never going to be the same person that I was. Has anyone had a decrease in the tinnitus since the initial onset of hearing loss. I can handle the hearing loss but this tinnitus is to scary for me.
December 22nd, 2007 at 6:46 pm
My tinnitus varies with a lot of environmental and physiological factors, but in general it has not really changed in the past 18 months since onset of SSHL. However, my ability to “tune it out” has gotten much better. For the first few months, listening to any music exacerbated it to the point of being fatiguing. Unfortunately, I still have the tinnitus, but I have gotten much better at living with it and enjoying the hearing I still have.
December 24th, 2007 at 7:13 pm
Hello everyone,
It has been a while since I posted….I just wanted to wish all of you a Very Happy Holiday Season. I know we all have SSHL which at times can be very hard for us to deal with especially with the tinnitus; but just for a second think about those who are in far worse condition than we are….. then realize how blessed we actually are. Again, I wish all of you the very best through this rough stage in your life. Have a Merry Christmas and a Happy New Year!!!
January 8th, 2008 at 12:23 am
Hi everyone, hope you’re all well. I was just wondering how you are coping at your job — if you are working.
I am on the phone a lot and my “good” (left) ear is often fatigued. I of course have trouble following conversations in our large office space when several people are talking. I also drive for my job (at times) and when I am the driver I have to pay extra attention to what the passenger is saying — sometimes dangerous when the passenger is soft-spoken.
Just wondering if your work situations have changed at all and how you are handling this. I’ve been dealing w/this for 6 mos. and it’s starting to get to me on the job.
‘
thanks and take care. and happy new year!
January 18th, 2008 at 11:33 am
I was wandering if anyone knows how the steroids work. I started taking them 2 days ago and it appears as though tha steroids have made me worse in my hearing ability. Is this common and after I quit takinh the steriods is when I may see some improvement. I think when you first start the steroids it does make you not hear as well and when your dose stars to get less the ear starts to get better naturally. Has anyone have any information on how the steriods work?
January 22nd, 2008 at 10:21 pm
Hello Sam,
I’m by no means an expert, but my understanding is that steroids decrease inflammation and increase blood flow. Initially my opinion of steroids was similar to yours (that steroids were not helping, but rather making the situation worse..as my hearing would get better then worse) but I was wrong. In my case I feel that the steroids really did help and eventually my hearing stablized.
Since this situation involves your hearing…I would call your doctor and get his/her opinion.
Good Luck!
January 26th, 2008 at 11:47 am
My hearing loss occurred about 2 months ago in my left ear accompanied by tinnitus and vertigo. The tinnitus is now in my right ear minus the hearing loss and I am still experiencing vertigo. Its funny because when I yawn the tinnitus disappears in my right ear making me think it has something to do with my jaw! Can someone tell me if they experience the same thing and also how long can I anticipate haveing vertigo and will it go away? Its almost as disturbing as the tinnitus!
January 31st, 2008 at 1:06 am
Hello all!
My SSHL in my left ear began at the beginning of November, 2007. I was plagued by tinnitus in addition to having the frightening sudden hearing loss.
I first went to an ENT and then to an otologist. I was on oral steroid tablets for 34 days, with little or no improvement.
Then my ear specialist, the otologist, performed the micro-wick ear implant in my affected ear on December 17th, 2007. It was a painless procedure and allowed me to administer three drops of dexamethasone steroid three times per day in my ear.
Today, January 30, 2008, he removed the wick because I have gotten back my hearing almost to the extent of full recovery of what my former hearing ability was. Miraculously, my tinnitus has all but disappeared, too!
I have nothing but praise for my otologist at the Ear Institute of Texas and praise to our Lord for restoring my hearing. I never imagined losing my hearing overnight at age 55, but I am thankful for the amazing medical treatment available today that brought about my recovery.
My otologist co-authored the book written about the implantation of the wick for direct steroid application to the ear. This made me feel very confident about receiving this wick implant, and I am grateful that I found such a knowledgeable and capable medical professional.
If anyone is on oral tablet steroids now for your hearing loss, do inquire about the wick implant. The sooner one receives it after losing hearing, the better the chance of hearing recovery.
I am so thrilled to be hearing well again and not to be plagued by tinnitus. I truly do consider myself one of the lucky ones!
May each of you have the good fortune I did. I feel as if I have a new lease on life. I hope and pray that each of you will get successful treatment as I did.
Sid
January 31st, 2008 at 8:21 pm
Hi all, well I am now another of you SHL persons.
I’m 52. and around Jan 07 2008, on a stressful business trip, I noticed this combination of hearing loss, full ear feeling, and low tone humming and strong head noise effect on the left side. Within 3 days of feeling it set in, I was seeking out a doctors in Los Angeles. Dr.’s there are overwhelmed with patients, and you cant get in to see anyone. I finally had to almost beg a local clinic to see me. They treated it as an ear infection. I went back 2 days later. Basically they told me to quit complaining and let the antibiotic have time to work. Those low grade quacks completely missed the point of hearing loss.
On Jan 21, back in Seattle, my primary Dr. sent me ASAP to a 1st class expert hearing Dr. who immediately understood what was happening. Oral steroids and an MRI. But that due to the California quacks, I missed being on steroids until Jan 24 2008. Now its Jan 31 with no noticeable improvement. Possible further loss.. I cant tell.
Next week the hearing expert plans to start putting steroids directly in my ear via a needle through the drum. Of course I’m upset. Letting myself stay in a stressful life, a stressful job. I did notice over the last year, more herpes outbreaks, and in fact I took acyclovir for several days on that trip. However, it is noted in a number web sites that acyclovir taken for SHL has no proven effects, as does the steroid. I also had a tough bout with a classic flue in late Nov 2007. The hearing expert says my blood workup shows a battle with a virus in the recent past.
But to remark on southern CA more. LA is not the city of Sgt Friday and Gannon circa 1968, it has really degraded into a mix of American people in denial (that their metropolis is a wasteland, not a place to raise a family) and the 3rd world of tijuana mexico. No amount of money could get me to move there, much less expose my kids to it.
February 22nd, 2008 at 8:33 pm
On Valentine’s Day, while sitting in my car eating lunch, my right ear popped. My head felt clogged the rest of that day and the next day. By Saturday morning I couldn’t hear anything out of my left ear. I went to an urgent care facility where they put me on steroids and scheduled me for an MRI on Monday. The MRI results came back normal, so I followed up with an ENT doctor today. He mention SSHL and sent me for a hearing test. I have to follow up with the ENT on Monday, but in the meantime I’m freaking out over this! I feel so alone and scared. But reading this board does help, knowing that I’m not the only person who has this strange, sudden condition.
February 25th, 2008 at 1:58 am
It is now February 24, and my doctor has kept me have been on Steroids since 24 January 2008, except for the first week, when trying the steroid injection into the ear (one per week injection). You can read my first post, just one post back from this one (Jan 31 2008). At the end of the first week of oral steroid, I had a roughly 25% recovery, of a near total hearing loss of the left ear. Since then, no improvement.
The SSNL condition started, around Jan 07 2008, and peaked around 10 to 15 January. If a person spoke next to my left ear, it sounded like marbles being dropped on to a steel kettle drum. Quite a horrible sound, and it made it very hard to understand people, even with my weak right ear behaving OK.
I’m looking into this semi experimental treatment of wick being semi-permanently put in the eardrum. The patient (that would be me) drips in topical steroid drops in three times per day. I have read about people getting most of their hearing back, and the tinnitus (the full ear feeling, and the roaring) mostly gone, in 6 weeks. My doctor won’t do it, she says she is not set up for it, and thinks it is inapplicable.. But I’m still in process of tracking this down (I don’t give up easy)
Presently, Feb 24 2008, I still have the tinnitus, and the massive hearing distortion. Granted it is less severe than the peak, at Jan 10 to 15, but still just an awful thing. It keeps you from sleep. The Tinnitus roar combined with the distortion of real sound is like a mix of a baby screaming and a honda car with a megaphone-muffler in your left ear when you are in business meetings. And sex.. that is off the table too, I’m too freaked out about my hearing.
Not trying to be funny about the sound description. That is what is sounds like. If any of you have information about the wick-steroid treatment, please post.
Perhaps God still has something in mind for me. Strangely, my reading ability, (which was always mediocre), has suddenly, over the last 2 weeks, improved to remarkable levels. I can read to kids like an actor reading a play, with all the inflections and perfect pronunciations. So.. strange.
February 25th, 2008 at 2:08 am
Hi Kathy: welcome. I hope this is temporary for you. It is freaky isn’t it! When the ENT told me it might be permanent I was shocked.
I’ve had SSHL since last June — the tinnitus is a problem that I’m constantly dealing with. I’m sure you’ll hear others’ stories. I hope you do have a recovery but please keep us posted.
February 25th, 2008 at 10:19 am
Hi Christine, thanks for the reply. Wow, since last June? It’s only been a little over a week for me and while the tinnitus isn’t all that bad for me, the dizziness is horrible. Are you able to function and work, etc? And have you regained any of your hearing?
February 25th, 2008 at 8:32 pm
I am interested to know if anyone has lost hearing in both ears?
I lost my left side three years ago and seven months ago my good ear lost almost all hearing.
People tend to treat hearing impaired persons differently so much so that I dread going out, it is the most isolating thing that can happen to a person.
I would be interested to know how you cope with life in general.
I have musical tinnitus which is almost unbearable at times, constant singing, humming, chanting.
February 29th, 2008 at 5:59 am
Why is my comment awaiting moderation and why is it taking so long?
March 5th, 2008 at 7:27 pm
Hey new folks. I’ve been dealing with this since Memorial Day 2007, just woke up with it. TM injections of steroids didn’t help, nothing has. You do adjust somewhat but at times of stress, the fullness and tinnitus seems much worse. Any of you that can be helped be very thankful. I am 54 and had this onset at 53 with absolutely no improvement at any time since. Still occasionally experience some popping noises but complete deafness continues and I pray every night the other ear stays okay. Good luck and keep us informed.
March 6th, 2008 at 5:48 pm
Hello,
I have been dealing with my sudden hearing loss since November 2007. When it first started it was the scariest thing for me to deal with. I was attending graduate school and needed to drop out because I was unable to focus. The hearing loss coupled with the ringing and dizziness was to much for me to handle. I have been to two ENT specialists where they have given me the standard steroid taper as well as steroid injections into the ear. Nothing has worked. I have also been to a dentist who has stated I have TMJ and through him I am hoping I will get some relief from the tinnitus. In the midst of all of this I have been able to really take a step back and evaluate so many things in my life. I have realized I take more time to focus on the bad and less on the good. I believe that I created this affliction. I believe that I deal with stress poorly, I sleep terrible and I sweat the small stuff. I am now trying my hardest to see the world in a new way. I am taking time out for myself. I am getting massages and acupuncture to reduce stress. I am taking the sweaty small stuff and tossing it out the window. Even though I have not improved I am happy. I can deal with this. Maybe this was the wake up call I needed because who knows it could have been a stress induced heart attack or stroke. My only advice is to believe in yourself. None of us have lost our minds nor is it terminal. Make the most out of it, be strong and find strenght in family and friends. Enjoy the world!
March 8th, 2008 at 6:27 pm
Hey C-I have tried exactly to adopt the same attitude. It does seem that if there is any common thread amongst several of us it’s TMJ. I wore braces about 20 years ago for it but have it again, dentist says I obviously grind my teeth at night and still have the problem although not with the severe headaches I had back when I got braces. I do believe stress worsens the side effects of the hearing loss and I noted earlier that someone stated they started a low dose of Valium and had improvement. I have not done anything like that but I too do tend to unintentionally overexaggerate things that happen in my own mind and create a lot of stress on myself. This does make you grateful however for the things we take for granted such as hearing, eyesight, reasonably good health. It certainly can change literally overnight or even in a heartbeat. Stay in touch with us!
March 30th, 2008 at 11:13 pm
This thread has been very helpful, as I have beeen dealing with a moderate hearing loss (around 45db at 4000khz) in the left ear since January 16th, 2008. A few weeks prior, I noticed fading or ‘pulsating’ hearing loss in the ear only when driving - similar to cupping your hand over your ear and removing it every second or two. I didn’t seem to notice it any other times. I think the consistent ambient noise when driving made me more conscious of it. So, in retrospect, there were telltale signs something was wrong. I just assumed it was fluid in my ear and that it would disappear eventually. Along the way, during what I percieve as a deterioration period up to the loss, I had hypersensitive hearing to loud noises in the ear. Kids yelling or simply ‘louder than usual’ noises created a terrible distortion in my ear. Eventually, the random hypersensitivity turned to a regular distortion of any sounds - wind noise when driving with the window down sounded like ‘earthquake noises’ or ‘boulders crashing down a mountain’. I saw an ENT specialist when I developed a stabalized hearing loss and was given a 6-day tapered dose of oral steroids. After three days and no improvements, I had an MRI, which later came back negative. After referral to one of the best clinics in the state, I had a CT scan, which also came back negative. After two sessions of intratympanic steroid injections, I have no improvement in hearing, the tinnitus is still there, but the fullness seems gone. I developed lightheadedness and had difficulty sleeping after the second steriod injection. The lightheaded/dizzy feeling was miserable and much harder for me to deal with than the hearing loss or tinnitus. I researched and found the injections have not been shown to cause vertigo or imbalance. My doctor confirmed this and gave a prescription for valium - this seemed to clear up the lighheadedness immediately. I assume stress and anxiety of the whole ordeal was most of the problem. The doctors consider what I have ideopathic and have no explanation for cause or real solid course of treatment, other than using the ‘gold’ standard of steroids. I’m a 37 year old male who has never had any health problems, so this has been very difficult to deal with. I am thankfull I still have some hearing in the left ear and a good right ear, as well as a supportive family and friends. I have had to put things into perspective and realize the rest of me is still healthy and life will go on normally. I wasn’t sure whether to fill my post with all this detail but I have found this ‘collectivity’ more helpful than a vast majority of my web research. Where others have elaborated, I have read carefully in hopes of understanding why this came to be or how to improve. I hope you find helpful as well.
April 1st, 2008 at 7:32 am
Hello everyone,
I am a 46 year old female and have experienced the sudden deafness in one ear the morning after a SCUBA dive, on March 24, 2008. 10 days earlier I thought I was coming down with head cold, but nothing surfaced. At the onset of the deafness I also experienced tinnitus and a little dizziness, but the dizziness could have been from being on a small boat for a week. I have seen three capable ENT’s and all have said the same: the likelihood of recovery from my profound deafness in the left ear is small, however on the 4th day after onset I have recovered quite a lot of hearing. I am due for another audio test on the 3rd of April. I started the prednisone, valtrix and bed rest on day three, and started taking the vitamin E on day 6, just in case. The tinnitus remains and the closeness feeling comes and goes. I feel light headed and unable to focus, but am hoping that is a side effect of the medication.
By nature I am not a stressful person, I love music and play the cello, but fear that it will be nearly impossible to play with my group in this condition. Right now I am trying to stay calm and set a good example for my kids who are watching me very carefully!
It feels good to have found you.
April 15th, 2008 at 5:59 am
Good news. My hearing is restored! The doctor couldnt explain it, and just asked if I would take “lucky” for an answer. Yes. I will take lucky.
As a follow up, in case it helps anyone, I did follow the bed rest instructions, and completed the medication prescribed. The prednisone made me feel very light headed and disconnected from my body, but that wore off about three days after I completed taking it.
April 25th, 2008 at 2:27 am
I too, have recently joined the ranks of SSHL victims. We were on vacation in Florida, woke up Easter Sunday with what sounded like and continues to sound like a constant passing of a subway, yet, with no hearing in my left ear. Ran to the Urgent Care center, the doctor diagnosed “sinus infection” and prescribed an allergen nose spray. Three days later finally found an ENT. She ran audiology tests and prescribed oral steriods, vitamins (C and Niacine), Walfinate, and 4 glasses of the darkest red wine (believe me, it becomes a chore once it is put in the context of medicine).
Once home, visited with an ENT and was immediately sent to a specialist at Provident Hospitals Ear Institute. Hearing was described as total loss, MRI normal. Started on steriod injections into the middle ear. Audio tests 12 days after first injection indicated 24% recovery. Hear the high range which is apparently constanents but can’t hear the low range which are vowels. Hence can’t discern words and the volume required in which I can hear is like ten times normal. Received my third injection today, however, audio tests prior to injection indicated no further improvement. Doctor confirmed that people with such a severe loss rarely recover any hearing. He suggested that I have a slight chance at recovering a bit more but as the second injection had no effect chances were slim that additional injections would provide additional recovery. He did, however, offer the third injection, if I wanted it. I affirmed that I will take or consider any option that may enable me to recover my hearing. Afterward he offered me the opportunity to try a hearing aide over the weekend.
This appointment pretty much closed the door for my hopes of a full recovery. He cautioned me on this aspect during the first visit but I find this difficult to believe that this has happened to me and that I will not wake up with my hearing back.
Earlier in the week I went to the Pistons playoff game, which I would have normally loved. Had a terrible time dealing with the noise level, spent most of the evening trying to focus on my hosts words and the “subway” was accentuated tenfold for a half hour after leaving. The next two days I opted to drive myself on a business trip through the mountains of Kentucky and Tenn. Couldn’t take the windows rolled down nor the sunroof open. Can’t seem to whistle or sing along with my favorite songs (never could get the words, but, my tone was always there, now I don’t know) or hear my wife whisper she loves me. Guess I’ll have to change my side of the bed ! Can’t putt worth a d__n, as I can’t concentrate. Boy the things you miss !!! Can’t bring myself to focus on reading, spreadsheets, etc…
Friends are urging me to go to Fr Casey’s Mission in Detroit, as medical miracles have been reported regularily. I’ll let all of you know if it works.
By the way for those logging satistics: I turn fifty this year, am pretty much a couch potatoe, about 20 lbs overweight, recently had a total EBT body scan no plaque buildup, high cholestrol and tri but not enough to warrant drugs, great blood pressure, many sinus infections. Own three companies dealing with the US automakers HIGH stress level for the past three years (internalize most of it), two kids in college and one entering high school. I was taking an over the counter Zrytec-D for sinus and did some heavy lifting the days prior (the doctors indicated viral as their best guess and said I would be driven crazy trying to identfy the exact cause).
Really need to get myself together, for family, work and friends. Thanks for the site, as I’m sure most of you have experienced you can describe it to others that haven’t got SSHL but they don’t have the slightest clue what frustration we are going through.
Take “good care” as my father would say!!!
May 7th, 2008 at 10:24 pm
my name is cathy iwoke up on march 16 sick aas could be. My husband took me to emergency room to get me to stop passing out and throwing up. It wasn’t until afternoon that i put phone to ear that i realized i couldn’t hear at all. I was diagnosed as having earwax. I live in a small town so I am still trying to process that. almost 2 months later no hearing at all back. right now just hard.
June 12th, 2008 at 2:26 pm
Here’s my experience of SSHL. I am a 56 year old Brit living in the Austin, TX. I write for a living but play in a band (hey, it’s Austin). I suffered a massive ear infection about 7 weeks ago, accompanied by complete deafness in the right ear, fever, and vertigo.
After a couple of days rest I went back to work, but I still felt weak, and the ear was stopped up (vertigo had gone). Saw my GP after 6 days and got some antibiotics. Still felt weak and feverish, still no hearing in the right ear, so I went back to the GP and got another round of antibiotics.
After 4 weeks I felt better and had some sound recognition in the bad ear but decided to see the ENT just in case. The ENT doc told me I had SSHL, ordered an MRI (negative), and gave me a course of steroids. One week later, feeling strong and healthy, I returned to to see the ENT doc. The result, some hearing improvement. Some sound recognition at a lower volume in the lower register in the right ear, about 25% of previous healthly hearing status. Voice recognition in that ear alone still difficult, but I do hear in stereo. No steroid shots in the ear (thank you very much). Too late in the disease cycle.
At the end of the day I can live and function well with the damage (Hell, I did 4 gigs with while feeling bad and with one ear completely shut down). The brain is a very creative organ and adjusts to adversity well.
However, out of an excess of caution I am getting a couple of custom-built ear plug/filters to protect the ears during gigs. They will allow for normal noise levels during a performance but filter out the really loud stuff when our drummer Steve goes crazy.
Good luck to fellow SSHL sufferers.
Cheers,
Stuart
June 25th, 2008 at 7:35 pm
Well, I’m a newbie in this, and just wanted to find a place to share my experience. I’m glad to find I’m not alone, and I would like to thank all of you for your helpful and insightful contributions.
It started about two and half weeks ago, where I just woke up in the morning with pressure, ringing, and what appeared as a high frequency distortion problem in my right ear. Pretty soon I discovered I could hear none of the fundamental frequencies of any sounds. Fullness in the ear and some slight throat irritation made me think I simply had a cold or a bad allergic reaction. I’m 59 and have no prior history of hearing problems.
It took me three days to realize I needed medical attention, and another three days to actually get it. I was seen by my GP and prescribed antihistamines, high fluid concentrations, low caffeine and told to come back in a week. Nothing helped, and after a week I was finally sent to an ENT, who started a low taper of prednisone right away (after my hearing test confirmed the loss).
I’m half way through the prednisone course, with no apparent change. The ringing in my right ear has increased, fullness is still there, and sometimes the left ear rings in sympathy..I’m getting quite depressed. Loud spaces, like restaurants, are pure hell, and I hate to keep asking people to repeat what they said. Phone conversations are very odd - I use my “good” ear which of course now completely isolates me from my surroundings.
I know I need to be patient and try to develop a more positive attitude, but at this stage this seems rather difficult.
Does anybody know any case histories of patients with this that have actually recovered? I read that 47% to 63% of patients with SSHL recover fully within 1 week to 2 months, but I have yet to read anybody’s actual success story..
Getting desperate in San Francisco…
July 2nd, 2008 at 9:58 am
Hi Everyone, I am so glad I found this site. I am just experiencing SSHL and the emotions of it is crazy! I recently released my first solo cd project and have had to cancel all of my singing engagements. This is driving me crazy because music is a great part of my life. Reading your comments have help me to feel somewhat better knowing that I am not alone but even as I am writing this I am tearing up because it just doesn’t make sense. I have always been healthy and have never had any medical problems and I am trying to get a grip on this. Some of you stated that you notice that stress causes the symptoms to get worse, just dealing with this is stress in it self. I am trying to be strong and I hope that one day soon I will get to the point where many of you are in accepting this but for right now I am feeling lost. Please keep the comments coming and I will continue to read and hopefully work through this. For those of you who are in music…one question…will I be able to sing again?
July 8th, 2008 at 5:49 pm
Hi, My brother took to his bed on Thursday (he never misses work or takes sick leave–never missed a day of school for 12 years) with what he thought was Vertigo. Finally after being prescribed motion sickness pills for 4 days the GP agreed to see him. He has been at the hospital all day and this was his diagnosis, but he will see a neurosurgeon tomorrow. He says his ear feels like a busted speaker. He cannot hear out of it at all.
Strange thing is my Uncle and a sister both lost the hearing in one ear when they were fairly young. (early 20’s) My brother is mid-forties.
I have tinnitus when under stress and tmj. 2 people in my family had mastoid operations. Just wonder if they are connected. (No pun intended).
July 29th, 2008 at 9:09 am
i am a 25 years audiologist with only 2 years of experience, i’ve heard of sudden hearing loss associated with certain meds and illnesses. its my first time hearing about sudden ‘SNHL hearing loss out of the blue’
August 3rd, 2008 at 10:29 am
about the roaring tinnitus — in both ears — that happened to Mary and Composer — you probably have severe tmj.
if your ears ring, but medications don’t work for you, then its probably tmj. You’re grinding your teeth and destroying your jaw at night. because the tmj joint is located close to the ears, inflammation in the TMJ joint or agitation of the associated muscles can actually cause tinnitus and a slew of other problems.
here’s what i suggest: basically take a webcam, or a dv camcorder, put on a dim light, and sleep with the webcam recording. make sure you get a good clear view of your mouth, and let the microphone be at a high recording level (sensitive) so you can hear how you sound. make sure you have enough disk space! these recordings can get big. probably a good thing to do is to set your alarm for about 3 hours after you sleep to save the webcam file and start another one for the second half of the night.
in the morning, view the video. jog through until you get to the .. GRINDING part. If you are a TMJ sufferer, most likely you will find that you are clenching and/or grinding your teeth INTENSELY during the night.
Note that CLENCHING is just as harmful, if not moreso, than grinding!
there is no ‘generally accepted’ solution to stop ‘bruxing’ (teeth grinding),
http://www.is.wayne.edu/mnissani/bruxnet/effects.htm
but you could try my solution: http://bobobobo.wordpress.com/2008/07/01/extreme-solution-for-tmj/
August 7th, 2008 at 9:23 am
Hi there–don’t know if anyone is checking this anymore, as I see it has been some time since anyone has written. My hearing loss was in April 2007. I have communicated serveral times over the past year+. Everthing kind of leveled off for me. I regained some of my hearing. Still have some fullness and the ringing , I hardly notice. This past week I started getting weird sensations of a wave coming over me, I would get a real full feeling in my bad ear with dizziness. I, of course, panicked, as I am so scared that something else will go wrong. Called my ENT who could not get me in until next week. Called my regualr doctor sho could not see me until next week. None of them show any sense of urgency what so ever. I went to a walk in clinic. They told me to go back on a steriod pack, take anitbiotics and meclizine for the dizziness, which I am doing now. Still, they have no clue as to what is going on. They did blood work and CT scan, both where fine. I am also taking my allergy medication, Zyrtec and nazal spray, as I am also stuffed up. I did see the dentist and the chiro a couple of week ago and each told me my TMJ was acting up. Anyone else out there had any relapses? I just don’t know what to think.
August 7th, 2008 at 9:44 pm
Hey, I too was worried no one was updating. I have had absolutely no improvement in my hearing, still totally deaf since May 2007, some days worse than others with ringing and fullness but have not had dizziness or nausea. My dentist really wants to make a custom bite plane for me to try at night to see if it will make any difference. He says it’s obvious I grind my teeth at night. I went through all this 25 years ago but the TMJ went back to becoming a problem about 3 years ago. Since I don’t have dental insurance I have not made the decision to go ahead but I’m strongly thinking it might help. TMJ does seem to be the one most common denominator amongst a lot of us and trying some type of realignment since the deafness would be worth a try. If it were just not so darn expensive with no proven outcome. I did laugh and tell him if I did do it and it reversed the problem, I would have to benefit monetarily from the discovery. Wouldn’t it be great if something so simple could work? I’ll keep the site updated if I have any improvement.
August 7th, 2008 at 11:35 pm
I’m now two and a half months into this (started June 3), with no strong signs of improvement. I have had some in single tone response, but very little on comprehension. Prednisone is done - nothing. I’m now on Nasonex nasal spray, along with moisturizers, and the very strange feeling that there is something pressure related, but can’t exactly pinpoint it. The docs are collectively clueless.
When I get on an airplane things start to (seemingly) improve at altitudes above 3000 ft. or so. At 30,000 it seems I can regain almost (but not quite) my previous ability to hear. Listening to music on earphones sounds quite natural, and the engine noise is very tolerable. Conversations with others are much more easily understood, no matter which side they’re on..
Getting back to ground level brings everything back to its present sorry state. All this “bubbling” going on when I swallow and/or blow my nose on descent! The stuffed feeling, and the loss of sensation of sounds from the right!
There is no question that I have the hearing loss, the only question is whether or not it is permanent. The fact it came on so suddenly gives me some hope, but as I said in an earlier post, I have yet to hear/read about anyone who has regained his/her previous normal hearing….
Ed
August 8th, 2008 at 10:16 am
Susan: Thank you so much for responding. I think the problem with the updates is that as long as we are going along with no differences, we do not keep in touch. I am guilty of that. Mine had settled for a long time so I just go day to day and live with it. Most times I just try and block it out. I am extemely careful with loud noices, as I do not want to do any unnecessary damange to my good ear. I feel better today. I am still taking all the meds. I hate taking the steriods. I am going to check into going back to a TMJ doctor. It has been years since I have followed up. It’s just strange that if it is TMJ related that it only happens on one side. The one side is a strange thing in itself, but thank God it is only one side. I still think that there are too many of us that have had some sort of TMJ/jaw problem. Also, our ages. Some of us have mentioned them. I am 52. I see that several are in their early 50’s. If you look it up on the internet, there are some doctors that say TMJ can cause hearing problems. I know about the insurance, I have run into this before. I have had 2 TMJ surgeries which I had to fight to be paid. They seem to think it is dental and a lot of times it is not. I will try to do better with writing as I feel that we are the only ones that are going to get to the bottom of this and also help each other. Whenever I feel alone with this, I come here. It’s nice to know I can. Thanks
August 11th, 2008 at 3:46 pm
My first bout of hearing loss occurred 4 1/2 years ago. After two months of no progress, I was referred to an ENT who immediately diagnosed a herpes (the cold sore type) viral infection of the auditory nerve. I took the taper pack of prednisone and 2mg of Valtrex. After about three weeks of the Valtrex my hearing was normal and the ringing was mostly gone. I have been fine until a month ago. The symptoms returned.
I went back to the ENT; we are trying the same treatment. So far, it has been 3 weeks and although some days I think it’s ok, other days are not. I am scared that the treatment may not work this time.
He has mentioned injection into the ear, but I am not there yet.
Has anyone had a test called Electrocochleography (EcochG)? I understand that it is invasive, painful, and dependent on the skill of the physician for accurate information (which may be questionale at best)?
August 15th, 2008 at 4:31 pm
Hello SHL group,
Just ran across this site when trying to find out what’s up with my hearing. I am essentially deaf in my left ear since I woke up this morning. I managed to get an appoinment with the ENT today and he’s got me on Prednisone and Acyclovir. So - here’s my question for those of you with the same issues. Assuming the prednisone is going to help, how quickly should I notice the change? Obviously I’m a bit concerned right now- and some real life experiences - good or bad - would be appreciated.
Thanks !
August 19th, 2008 at 3:25 pm
Hi everyone: Just wanted to post an update for those that are still following along. I have just completed my 12 day steriod pack and my symptoms of a reoccurance are gone. Do not know if the steriods helped or if it would have went away on its own—but did not want to take the chance. It just seemed like a waiting game. The bottom line is that know one knows for sure what to do when it happens. I am back to the same condition that I was after my initial loss, and than some recovery, back in April of 2007. Hopefully, these reoccurances do not keep happening. Only time will tell I guess!!!
August 27th, 2008 at 9:00 pm
Hello Everyone,
Carol I do believe you are correct if there are no changes we don’t respond. I am trying to be very positive about what I have been going through. This all started for me back in November. Everyday it is like it starts all over again. I have been doing many things to help me keep my mind off of it; working out, yoga, acupuncture and monthly massages have been extremely helpful. I have used some of the techniques in the Taking control of TMJ by Robert O. Uppgaard. I haven’t seen results as of yet but I will keep hoping something will turn for me. Slowly over the past few months I have been getting ringing in my right ear as well as my left ear. I’m not sure why and tomorrow I am going back to my dentist. I think I am going to pursue getting a hearing aide as I have read in many places that it is very helpful and successful for people with SSNHL. I feel slightly defeated but if it will give me some relief from the ringing I am willing to try. Please more people tell your story. Everyday this happens to someone and your stories will help someone realize they are not alone.
:)
September 9th, 2008 at 9:18 pm
I am very happy to have found this website and read all of your comments. I experienced sudden hearing loss this past April 2008. It has been quite a roller coaster. Getting appointments with the various doctors prolonged my diagnosis, and yesterday, I think we may have figured some things out. Bruxism (grinding of the teeth) seems to be my main problem right now although I also experienced a loud noise to my right ear. I have worn a nightguard for over 20 years and I have experienced a clogged ear feeling twice in one of my ears. Those two episodes were spaced many years apart and each only lasted a few days. This past April, I awoke with that clogged feeling in my left ear. This time, I remembered the previous episodes and that my ENT had said that he couldn’t see anything in my ear. He had asked if I grind my teeth — I said yes — so we figured that was it and the clogged feeling ended up going away on its own a few days later. This past April, I assumed it would just go away by itself once again. Unfortunately, the following day someone popped a plastic bag right next to my right ear, the other ear. It sounded like a firecracker or gun had gone off and it also felt like a knife was being stabbed in my ear. I was initially concerned but didn’t think I could do anything about it. I didn’t know about the importance of getting on prednisone ASAP. A few days later, I noticed that I had lost hearing in that right ear. Later, I ended up having major white noise or a muffled sound like a blown speaker in my right ear but I was also having a clogged / pressure sensation in my left ear. Music sounded awful and crowded places were difficult. Certain noises assaulted my ears and even made me flinch. I tended to stay home in silence in order to be more comfortable. I was upset a lot. The tests have shown that my right ear has low frequency hearing loss. Like some of you, I often don’t know where sounds are coming from but I fortunately I still have good voice recognition. My main discomfort is the white noise and the feeling of clogged ears as if I’m on an airplane. It’s mostly in my left (good) ear but sometimes I feel the pressure on both sides. Yesterday, the specialist said that the pressure is probably from TMJ. Pressure, tinnitus (including white noise), and muffled sounds are all symptoms of bruxism or TMJ. I have been researching treatments on the internet but have only found ones pertaining to TMJ and misalignment of the teeth and jaw. I want treatments for bruxism other than wearing a nightguard so I have had to come up with a few ideas myself. I am going to take Benadryl every night for awhile to see if it helps me sleep deeper so I don’t grind my teeth. I am also going to take an over the counter anti-inflammatory to address any swelling. In addition, I have made an appointment with my chiropractor to see if she can help me. If any of you have any other ideas, please let me know. I think most of my annoying symptoms are related to bruxism rather than the loud noise that I experienced. Grinding of the teeth could easily have an effect on the mandibular joint and surrounding tendons which are right next to our ears. If that area gets inflamed, it makes sense that it could possibly have an effect on our hearing and also cause tinnitus and pressure. I’ll let you know if any of these things help. The only other thing I have been doing is to pray for acceptance. It has actually helped a lot. I don’t get really upset about it nearly as often as I used to.
September 10th, 2008 at 7:51 pm
Hi:
I was just diagnosed today and I am still deciding which option to take (pills or injection). I didn’t like the side effects that came with the pills and don’t like the idea of an injection into my ears. Which is better the injection or the pills. I just took my blood test today and will have an MRI next Friday and hope that nothing is found. I am one who never gets sick and this came on so suddenly, I don’t know if I ignored signs or what, but it’s good to know that I’m not the only one.
September 11th, 2008 at 11:28 am
Hi - Just an update. I went back to the specialist this week as I had a terrible day on Saturday. I kept getting episodes of dizziness, and a real fullness in my bad ear with ringing. I thought that the recent steriod pack that I had taken had made it go away. They have a new specialist in their office (Otolayngology, Otology and Neurotology) She is suppose to be the best. She is from Shands in Gainesville, Florida. I had another hearing test which showed my hearing had decreased slightly. After reviewing my chart and talking to me, she diagnosed me with Meniere’s disease. She said if it was just a true SSHL, I would not have any reoccurances. The initial symptoms are the same. And the treatment is somewhat the same also. Steriods are used with bad spells and can be injections right into the ear. I have to avoid salt, caffine and alcohol, and I also have to be on a daily water pill. There are other things they can do, but she is going to see how this works for me and I go back in 3 months. I feel a little bit better having a diagnosis for now, but I do not know what the future holds. Hearing loss, and all of the symptoms associated with it are part of Meniere’s as well. Just my update—if I can be of any help to anyone, please let me know.
September 13th, 2008 at 12:29 am
Hello everyone,
Carol, C, and Susan….you are all so right- I too, was a little concern that no one was checking in anymore to this blog! But I am convinced if there is no new news or some sort of a solution or remedy, many of us just go on with our daily lives. I know we all get very busy - and some of us probably decided just to deal with alone….but we need to stay in touch with each other even if it is only for comfort that others are dealing with this dilema. For me, it has been one year and four months since that dreadful morning awakening to my SSHL. I have since purchased a bionic inner ear hearing aid that fits in the canal and barely noticable which was expensive, but I felt that I needed it. It has helped greatly and brings my left ear up to average hearing ability….I just find myself always answering how and why does someone my age wear a hering aid - by the way I just turned 34 years old. Everyone is just amazed about our story. Lately, guys I have notice some TMJ/jawbone problems that I have been experiencing; I remember reading several months ago about others who were having that same problems and I was wondering could SSHL and TMJ actually are linked? Sometimes is hurts when I bite down and and squeeze top jaw and bottom jaw together, it really hurts. I find myself opening and closing as if it were some sort of jaw exercise for some sort of comfort. Maybe I should see my dentist and get some advice on this as well. One of my colleagues has gone through this dreadful experience as well but she has had no hearing loss…just terrible tinnitus and severe vertigo. I often tell her she is lucky but she doesn’t feel lucky because of the vertigo and the constant ringing in the ears. I must say, I have adapted and made the best of it and am enjoying life to the fullest but I am and looks like always will be handicapped in regards to my hearing loss. I have even gone back to my normal activities of working our 3-5 times a week vigorously with no complications. I try not to let this hinder me much but it is what it is. In closing, I wish all of you the very best, I will continue to pray for all of us and go bless. Let’s keep responding - you never know who we can help by doing so.
September 19th, 2008 at 4:04 pm
I just came across this blog while looking for some answers myself. I woke up with SHL in June and a terrible case of vertigo. After a trip to the ER, a family physician, two ENT specialists and an audiologist, plus the round of oral steroids and three direct shots of steroids into the inner ear to bring those little hair cells back to life, it seems I’m left with “it is what it is”. I’ve been taking vitamin E twice a day and the ENT recommended lipoflavanoids for the 24-7 tinnitus. I feel like a bobble head all the time and experience pressure in my sinuses. Anyone have any suggestions? meniere’s has been ruled out
September 24th, 2008 at 3:55 pm
Found this blog as I continue to investigate my SHL. I woke up one morning four weeks ago unable to hear in my right ear. When I got out of bed, I stumbled, knocking things over. I was terribly dizzy and couldn’t get my balance. Unfortunately, I waited several days before seeking help. I got in with an ENT (thanks to his having seen my daughter previously) and was shocked at his diagnosis of sudden sensory neural hearing loss. We tried the steroid injections in the ear and oral steroids, to no avail. I was advised that the longer I went without hearing recovery, the less likely it would happen. I was cautioned that I would experience a feeling of “mourning” of the loss of my hearing, and I did for a little while; however, when my MRI was negative for any tumors or strokes, I was able to put things in perspective and feel gratitude. Waiting on the MRI was a nightmare.
I will be fitted for a hearing aid Monday, which will be my fifth week of SHL. I am amazed that Matt has been able to wait so long for one, as the hearing loss is driving me mad. I can’t wait to try the aid! My dizziness diminishes every day, and I feel almost “normal” now, except for the hearing loss.
Finally, I wanted to ask everyone about the reactions of their friends and families. While there are more serious conditions out there, this is certainly traumatic, yet I found that where my immediate family has been supportive, my friends have not. I get comments like, “Hope ya feel better soon,” or lack of interest. It’s made me feel isolated, and I find I don’t want to socialize as much. I feel let down. I want to talk about this, yet I’m made to feel as though I’m just a complainer. I wondered if anyone else has felt this way.
Thanks for this venue to discuss SHL.
September 25th, 2008 at 7:38 am
I’ve re-read through some postings I missed. I’ve shortened my name to “Chris” as I see there is another “Christine” (I typically go by “Chris” anyway).
I guess, in my excitement of finding others like me, I read some of the messages in a bit of haste. I was intrigued to read about the possible dental/tmj connection on my way back through today.
Interestingly, a few months ago, I had a crown placed on the back molar of the same side of my SHL. My teeth are pretty good; however, this tooth was a real problem and posed what my dentist described as one of his biggest challenges!
Also, I’ve had a problem for years of not so much grinding my teeth at night but clenching.
Could there be some connection with all of this? One day early on in my SHL I experienced pain all along my jaw, chin, and base of my skull. These places were all suddenly tender to touch. This tenderness subsided the next day, but nonetheless, I found it to be a perplexing addition to this bizarre situation.
September 30th, 2008 at 1:33 pm
Hello everyone, I am new to posting on this blog but I read it religiously beginning in Oct 07. October 3rd to be exact, this was the day I woke up to SSHL. I waited 2 dreadful weeks before going to the doctor. Finally broke down and had to seek help. They started me on nasal spray (steroid) and said that I had fluid behind my right ear drum. Thank God the left ear has been ok. I spent the next 2 months continuing to take the steroids with slight relief but still had the hearing loss and horrible tinnitus. Needless to say they referred me to an ENT who gave me the impression that it was all in my head or because of my diet. It wasnt until I met with the audiologist that he realized I really did have hearing loss. Mine is low pitch so that kind of threw him off. My SSHL has days where I can hardly notice and days that I want to jump off the nearest bridge. The ENT told me to monitor my hearing and tinnitus and come back in 3 months. He’s suggested Meniere’s syndrome although thankfully I have never had vertigo. Since I am coming up on my one year anniversary of this mess I wanted to blog and let you all know that when this all started happening to me I found this blog and it TRULY helped me cope. It made me realize that I wasnt the only one that this was happening too. Thankfully, although I do constantly hear some sort of noise (slight ringing or shwooshing) in my right ear, it is pretty minimal now and depending on the day my hearing is almost back to normal. I take nothing for granted and everyday I am not crippled by the tinnitus I am truly grateful. I just wanted to let you all know how much just reading this blog helped me get through this hump that hopefully I can put behind me. I just turned 35 and I never imagined I’d have dealt with something like this at my age.
Thanks so much for your blog and I hope everyone finds some sort of relief from this as I have been blessed to find.
October 6th, 2008 at 9:35 pm
I have now suffered what all of you have gone through. Mine started just last Saturday. I regained mine for about 4 hours ,went to bed and then awoke to nothing and vertigo. I have some hearing in my ear but it is like a broken speaker. I started my steroids on the 7th day of loss. I hope I have good luck. This is awful. I am 49 and losing this now would really hurt me.
October 20th, 2008 at 1:39 pm
I woke up on October 1 with right ear hearing loss (hearing only static), terrible vertigo and nausea and vomiting. I immediately went to a Prompt Care and was told I had a sinus infection putting pressure on my eustachian tubes, although my ear drums looked normal. I was skeptical because I have never had a sinus infection, allergies and did not have a cold. I was sent home on antibiotics, antihistamines, sudafed, and something for the nausea. 2 days later I went to my GP and he told me it was not a bacterial but give it a couple days (the worst advice I ever took.) So, on October 7, I finally got a MRI, which showed labrynthitis and a referral to an ENT. On October 20, I saw the ENT, I am much more balanced, eating fine, but only the continual sound of static and an occasional high ring in the right ear. To my dismay, I find out that I have Sudden Neuro Hearing Loss and possibly if I had been treated with antivirals and high doses of steroids my prognosis would have been better. I had been treated with steroids October 7 but a low dose. I am now going to have an experimental procedure done where they put the steroid directly on the nerve ending and in the middle ear. Time again is of the essence because best results, although probably minimal, this needs to be done within the first 30 days. At this point, I was told the ear is essentially “dead” and I have nothing to lose. I would wish this experience on no one and am upset with my self, a RN, who put my trust in a doctor who did not see the red flags. I am praying this new experimental procedure helps. I will keep all posted.
November 1st, 2008 at 3:10 pm
Hi there..I think I accidentally wiped out my last comment.
My SHL began in my right ear on Sept 16 / 08. I went to emerg
next day and was put on prednisone. I then saw a specialist at mt. Sinai
on sept. 19 who put me n Valtrex and lazac ( water pill ).
To date, not much improvement ( 70 db hearing loss = moderate to severe ). I cannot discrimate speech…which fills me with anxiety
when I imagine the problem travelling to the other ear. I wouldn’t be able to communicate to people..shut out..no phone use.. This thought is
agonizing.
My situation seems different than the ones I have read . I have never experienced nausea / vertigo or headaches.
My specialist says that there is too much salt in the fluid in my inner ear.
I wish they could just stick a straw in there and suck it out…its driving me crazy.
Anyways…Can anyone answer these questions ?
1. Has anyone had this type of SHL ( moderate - severe ) where there is no vertigo / nausea / headache
2. if so, what was your course of medical intervetion ?
3. Has anyone had it travel to the left ear ? has anyone had the sensation
of sounds being louder in general out the good ear..and slightly tinny
sounding ?
4. has anyone had SHL from exertion ? I worry that I overdid road biking
this spring - summer….thousand of kilo’s with lots of pushing over
massive hills etc.
5. curt….what is your decible range of hearing loss ? the bionic device sounds interesting…does anyone know what options are available for people that cannot discrimate speech ?
Thank you to anyone who can help. I do feel somewhat better to read that I am not alone. ….and that there is some hope. thanks to all who have written. I will share as much as I can in terms of my own situation / advice and remedies that I continue to receive…
November 2nd, 2008 at 6:48 pm
Hi, all. I’m in my first week of this. Total loss in my right ear. I’ve entrolled in a clinical trial at Hopkins where I am recieving a heavy (60 g a day) dose of steriods. I have the typical going on . . . fullness of ear and ringing. The vertigo has pretty much stopped. One question, why am I so tired? has anyone else experienced this?
December 18th, 2008 at 7:57 am
Hi there, it has been quite some time since I have written or checked this site. Since October 2006 I have been profoundly deaf in my left ear. I was very relieved to see the 2 year anniversary come and go with no decline in my hearing in my right ear.
I have returned to all my previous activities, however I am still quite nervous riding my road bike as it is very difficult to judge where noise is coming from.
I experience ringing in my good ear too sometimes, however I think I am more tuned into observing this now, and I do notice the ringing more when I am tired or have a cold or sinnus. When I have a bad cold I try and remind myself not to freak out and ride out the dulled hearing and ringing in my good ear. I am getting better at this.
I only really experienced vertigo when I lost my hearing and my body was trying to readjust. I have the constant ringing in my bad ear, which hardly bothers me now. I do notice that it seems more pronounced in very noisy environments or if I am stressed.
Most frustrating are noisy shopping centres, restaurants etc. But you get by or bluff through it. My children have learned to help me out in shopping centres and repeat things that shop assistants say. I find it most difficult to establish new friendships.
I did the whole TMJ thing and spent a lot of money on splints. While I think the splints have helped with the ringing in my good ear, headaches and neck pain, I don’t think it is necessary to have to spend a lot of money on splints. I think there are people out there who take advantage of those feeling vulnerable due to health issues. This far along I have no delusions that any TMJ remedy can return my hearing, however I am happy that it has been able to address those other issues I just outlined.
I am interested in those who have got a hearing aid and how this has been going. I was told that because my hearing loss in my left ear is profound an aide wouldn’t help.
Lastly I guess life didn’t stop the day I lost my hearing, and there have been many wonderful times and some very sad personal losses since, which has helped me put in perspective my hearing loss. It still annoys me greatly that I have had to accept this disability, but accept it I guess I have as I had not other choice really. I still hope I learn from the experience, whether it is more tolerance or to be a better listener to others and myself.
December 20th, 2008 at 11:11 am
Sorry for the comments that have been in moderation queue forever. It appears the email notification I’ve been using wasn’t following through. I’ve got a lot to read through now.
An update from me — hearing is about the same as it was the first weekend in. I did recover from the worst of it, but do still have residual loss and tinnitus. It’s not debilitating, but frustrating in some situations. I’ve tried a hearing aid, but not committed to one permanently.
My doctors say the small cyst in my jaw doesn’t indicate TMJ and that it has nothing to do with the hearing loss I’ve experienced. At some point I may look for some second opinions, but I just don’t think this has anything to do with the current state of my hearing. It may have played a role in the loss, but I don’t believe it is preventing additional recover.
To Tom: the steroids made me extremely tired and increased my appetite drastically.
December 24th, 2008 at 4:31 pm
It’s been a while since I’ve been here. Any of you who have read this website may be familiar with me. My case is almost like Maddie’s except I never had vertigo, just woke up with fullness in my left ear and found out when trying to answer the phone that day I was deaf. I am completely deaf in my left ear and this happened Memorial Day 2007. Nothing has helped. You do learn to cope pretty well and I still have ringing, fullness, popping, clicking and all in that ear. When this first happened I swore I would not be one of those people with trouble hearing who pretend they know what people are saying and just kind of nod your head like you are understanding but I have caught myself doing that. It is so aggravating when people like my hairdresser never seem to remember my problem and invariably want to talk to you while washing your hair and standing on your left side. I think sometimes I have managed it so well that even my family members tend to forget it and put me in situations to have to say “huh?”. I hate that. I too have a big problem in some social situations. Our church may have an after service lunch or some kind of gathering and I find that particularly difficult as many people talking all around really interferes with being able to understand clearly out of my good ear. My dentist wants to try to design me a bite plane for my TMJ which is particularly bad on my left to see if it would help. I went through all this and braces 25 years ago and only got temporary relief of TMJ. I too had a crown not long before this hearing loss appeared. I feel almost certain there is a link but my take on this is that even the most “highest” of professional ENT MD’s really don’t take much interest in this. The head of ENT at Emory just stated “we haven’t cracked the code on this yet” and after the TM steroid injections didn’t work (which I did start receiving within a week of onset) could only offer me the BAHA. In my case, a conventional hearing aid would be of no use. I too had to count my blessings after my MRI didn’t show any tumors or anything serious but this is one more aggravating circumstance which I am kind of tired of trying to explain to people who are not familiar with it and kind of look at you like your either crazy and just very strange. I’ve tried avoiding caffeine and it did not really affect the ringing and fullness which sometimes really becomes nerve wracking. As I stated before, the phrase “deafening silence” takes on new meaning. Anyway, everyone hang in there, keep in touch and although I have not visited here lately, it is my “go to” place when I get so frustrated. It’s just like I woke up that morning and life has not been exactly the same since. I just kind of stay a little paranoid that the other ear will go the same way. Know what I mean? Take care!
December 30th, 2008 at 12:32 am
Hi everyone! I came across this web site the first part of November just 2 days after losing all hearing in my left hear. Like most of you, the onset of my SSHL happened in a matter of minutes. I was sitting at my computer and began to hear a static sound. At first, I thought the noise was coming from my computer but in actuality, it was my left ear. When I stood up I was extremely off balance. I didn’t realize that I had lost hearing in my left ear until I attempted to answer my phone. I thought that I possibly had an inner ear infection so got into my family dr. the next day. He scheduled an appt for me with an ENT the following day. The audiology test showed absolutely no hearing. He prescribed 60mg of prednisone daily. After reading this site, I realized that time was of the essence and that I needed to get to an otologist asap. I got into an otologist in Indianapolis three days later. He confirmed the diagnosis and scheduled to implant the micro-wick so that dexamethasone steroid drops could be inserted 3 times daily. Considering that I had no hearing and a balance problem, the prognosis was less than the reported 60% improvement rate. After two weeks of putting drops in daily, my hearing had improved so that I could repeat 45% of the words on the audiology test. I was thrilled that some of my hearing had returned. I go back for further testing the middle of January. I have the white noise that many of you have talked about and didn’t know how I was going to live with it but my tolerence has improve drastically. My otologist prescribed a low dose of Xanax because it was evident that my emotional being had been turned upside down:) I wasn’t sure that I would ever feel like the person that I had been. I’m now about 1 1/2 months into this and am happy to say that I do almost feel like the same person. Good luck to all of you. I am so happy to have found this site because as many of you have said, I had not heard of SSHL.