Sudden Hearing loss _{Page 86 of 105}

Thanks Shortcake and Suncasa. I'm seeing Doc again Wed for hearing test and another injection. I've started to taper off of Predisone after 14 days at 60mg. What course of anti-virals do you think I should ask about? I asked about Antibiotics too but he seems sure I have no infection.

Hi Songdaddy, I was diagnosed with SSHL in my right ear after blowing my nose hard on Oct. 15th, one day before you. Who would think blowing your nose could cause such a serious problem? My hearing started to return after 2 weeks of oral prednisone, so hang in there. Waiting for a positive result is one of the most difficult situations I have ever encountered. I currently have mild hearing loss in the high frequencies. I also have severe tinnitus in my right ear (if any one has any suggestions please let me know). I hope things go well for you. Thanks to everyone on this forum. Reading your posts has helped me keep my sanity over the past few weeks.

I just read all of the new postings today. I lost my hearing on Aug 21 for the third time in five months. This time it has not returned. I've had prednisone therapy, shots thru the ear drum, and now am on Methotrexate to see if it will help. I have repeatedly asked my doctors about anit-virals and they poo poo the idea. I went to 'shortcakes' suggested web site tho and am taking the info with me to my regular MD tomorrow. I don't why they are so reluctant to give me anti-virals when they sure aren't reluctant to give me the Methotrexate which has all kind of severe side effects. I have stomach trouble and being cold all the time. I am so happy to hear that shortcake has had a good recovery with the anti-virals. I wish you all well. It is a very discouraging disease to have. I wake up each morning hoping that today is the day I will hear again. I think I could probably handle the hearing loss better than having the tinnitis in both ears. My hearing loss is also in both ears. The Methotrexate I guess has helped some as I can now follow a conversation if is directly right at me. Get three feet away from me and I can't hear a thing. Very disconcerting. Can also now hear water running, doorbell ring and phone ring. Talking on the phone is almost impossible. Good luck to all of you.

I have not been on this forum for a long time. But just want to touch base with some of the posters from way back in 2006 and 2007.
I never recovered my hearing in the right ear. And now my hearing in the other ear is going down also.
But I am told that I am still not a candidate for a CI.
I do not understand that because I know quite a few people from the 'Say What Club' their CI list who have a CI on one side and a hearing aid on the other side.
This last weekend, my hearing went way way down in the remaining hearing ear, but it was a wax blocked ear. However, now my hearing aid does not seem to work as it did before or it needs to be reprogrammed because of some dammage that was done to the ear during the wax removal at MEEI.
I am so frustrated, truly.
Take care
Hope01

I am amazed at the sophistication of this forum! I'm an 'old-cloth' medical doctor who listens carefully to patients and spends most of my time researching and keeping up with the literature so that I'm extremely well-informed or at least I will know what I don't know, and God-forbid, I'll never cause harm.

So now that I'm a patient myself with SSNHL, I've managed to research the field to the extent that I feel like a genuine 'idiot-savant' on the topic. Also, I've tried just about everything I could find in the literature: herbs, acupuncture, anti-virals, anti-oxidants, anti-virals, oral steroids, intratympanic steroids, and even hyperbaric oxygen (just twice as the noise and pressure changes troubled me).

There's been no improvement after 3 months but I am visualizing the little cochlear hair cells waking up from hibernation or even new ones growing. Why not? Science was wrong about brain and liver cells not being able to regenerate! So I'm praying and meditating a lot!

I've written 8 books on the subject of Integrative Medicine, which I founded in the 70's as a biosocial and psychospiritual approach to health and wellness. My last book is entitled 'Stress management in
Today's World'. (Published by Readers Digest, 2009; my last name is Taub).

The bottom line is that I believe God's presence is in every living thing. And, believe me, that includes our cochleas, hair cells and auditory nerves!

I started this post by expressing some amazement. That's because even as a medical doctor who is able to take advantage of all sorts of professional courtesy-especially being listened to (at least for the most part)--I have not done any better in accumulating important knowledge and understanding than any of the people/posters in this forum. Instead, I am learning a whole lot in this forum that i didn't know, even in my intense research and my ability to call virtually any learned specialist in the country and pick his or her brain.

What i have learned all over again is the importance of loving care, concern and compassion--especially the latter. I've tried to extend such qualities to patients since entering medical school 50 years ago. Now, being on the other end, I confess to feeling great sadness when I visit some of the top super-specialists and feel they could be talking to an inanimate object rather than me. It's seldom been the case, but when it happens it makes me sad, then angry. Oh well.

Ed Taub

Hi Jakeabe;

Your doctor is probably very forward looking and I may be missing part of your history. However, it's been clearly demonstrated that Methotrexate is no more effective than a placebo for autoimmune hearing loss, at least in terms of adding any benefits to the use of steroids.

Unless you are already well aware of the above, I would seek clarification if I were you. I look forward to your response.

Hi Jakeabe;

Your doctor is probably very forward looking and I may be missing part of your history. However, it's been clearly demonstrated that Methotrexate is no more effective than a placebo for autoimmune hearing loss, at least in terms of adding any benefits to the use of steroids.

Unless you are already well aware of the above, I would seek clarification if I were you. I look forward to your response.

Hi everyone

Its a year today since I lost most of my hearing in my left ear. Despite treatment with Prednisone, I didn't have any usuable recovery. I did have some improvement in very high frequency, but not much use for hearing most every day sounds. I have constant tinnitus but on the whole it doesn't really bother me, except the odd night when it seems to flare up with a multitude of sounds. Sorry to see yet more people on here with this hearing loss. Still seems to be a medical mystery with an unknown outcome

Hi Ed, I was having what seemed to be great success with anti-virals. I was diagnosed with Meniere's. My low tone hearing went out suddenly last March. Do you have high or low frequency loss? Since your into alternative therapies. I would recommend doing hypnotherapy (with someone really good- I would only go to a ACHE certified therapist) and get to the root cause of the problem. Our bodies respond to emotions and core beliefs that are stored on our subconscious minds. Since you believe in the mind/body connection already- you may find that you have great success in this area. I am clearing my root causes but am feeling discourage this week because my hearing had come back 100 percent fully and now it is back out as bad as it ever was. I hope that as my body regains it's inner balance, things come back into alignment and my hearing returns again. I'm also pursuing allergy treatment.

Anyway you can email me if you need more info on hypnotherapy- my email is in my profile. Take care.

Samara

Hello etmd22.
I read your interesting introduction post. Believe me I know what you mean. These onsets of SSNHL are no fun. I had one on 1/22/2006 while shopping in a Super Market and I never recovered from it. But then I must say that I only got 6 days worth of oral Prednisone. The ENT doctor was afraid to give me more because of the other medications I am on for high blood pressure and bad cholesterol. After the 6 days I had gotten back some hearing and I heard some garbled speech on the TV. But then it all went away again within a week.
I am now a retired software QA engineer and I have spent a lot of time researching these onsets of SSNHL. I am a patient of MEEI in Boston and at this point I am very frustrated because over the last weekend, I thought I had another onset of SSNHL, but it ended up only being a blocked ear with wax. However the removal of the ear wax at MEEI did not solve all my problems as now I cannot clearly understand any dialog on the TV. MEEI did an audiogram and I was supposed to have the hearing aid checked and that was not done right. They should have checked the programs on my digial hearing aid the BTE Savia 211 from Phonak.
I just wrote an email to the head of the audiology at MEEI and I expect them to do a good check of my hearing aid next week.
I have a lot of faith but so far God has not helped me with my hearing situation. I go to communion at Mass on Sundays and I always take a tiny bit of the host and stick it in my deaf ear while praying to the Almighty to help me........God has his reasons.
Please excuse my English, I was not schooled in English as it is my third language, I was born and raised in Alsace-Lorraine and therefore French was my first language and German my second language. I wish I could write better as I would love to write my memoirs but as my Kids say 'Mom who wants to read your writing'
You must be a good writer having written so many books. At least your hearing problems do not interfere with your writing. That is a good thing.
Oh yes I almost forgot, I have been told that the window of treatment for SSNHL is very narrow, so unless a miracle comes about our hearing in the ear with SSNHL is gone forever. Also my other ear has a severe loss due to an ototoxic antibiotic I was presribed a while after the onset of SSNHL and that was for a severe cold.
Take care and keep on writing
Hope01

Hi All,
Again, it seems that as soon as I post on this forum, the forum posts stop coming in.
That is one of the reason I am afraid to post here. Happened in the past also.
Have a wonderful weekend everybody
Hope01

Hi All, I'm an oldie from 2006 too.I am in the UK. My loss was sudden, went to bed fine and woke up deaf. I had some recovery on oral prednisone in the first 10 days but nothing since. I wear a hearing aid and have severe tinnitus 24/7 which can be very annoying. I try to remain very positive and urge everyone else to do the same though I know its hard! The most frustrating aspect is the apparent lack of cause.

I too am an oldie, also just woke up totally deaf on left side Memorial Day 2008. No recovery whatsoever after TM steroid injections, oral steroids and a bite plane for TMJ readjustment. Never got one iota of hearing back even temporarily. Also have the severe roaring, clicking and noises in the ear. Communicated with Hans from another website who went to Germany to Dr. Wilden for laser therapy and he gave me a website address about a year ago. Insurance did not cover it and it was rather expensive and experimental. I just didn't feel I could afford the trip and treatment on my own, especially since results are not guaranteed. If I remember however, Hans had a good outcome I think. I have his email address but that cannot be posted. Just wonder why we don't have some physicians here more interested in more innovative trials. When this happened to me I did find that NIH was doing a study but there was no where near me that participated and flying at that time was not recommended, especially when receiving the TM injections. I did go to Emory and the head of ENT there said he was reviewing the result of these studies but interestingly enough I have not heard of any outcomes on any of this. I did begin treatment within a week of onset but it never made any difference. All of you know the frustration at trying to get the current medical community to acknowledge the severity and quantity of cases. It's more like well this just happened to you, haven't figured it out, there are little to no options available for successful treatment, just learn to live with it. Only problems is, if any of you are like me I still go to bed every night praying that I don't wake up totally deaf with the other ear 'going out'. It's a heck of a way to live although don't get me wrong, there are worse things that could happen but isn't it a shame this obviously more common that you think problem has up to this point been basically ignored.

etmd22: I know the implications are not good for Methotrexate but I really don't have a lot of options and am willing to do most anything to regain even a small portion of my hearing back which I have received since the start of the Methotrexate. Coincidence? Possibly, probably. But, you I almost completely deaf in both ears. Lost the hearing in my right 14 years ago from an inner ear infection which they now think was possibly viral. Then in Apr. of this year I had surgery and woke from the surgery with roaring in both ears with reduced hearing. After about a week it cleared up. Then the end of May I lost my hearing during church services. The room seemed to tip. I was singing at the microphone and my voice began to sound like I was echoing and by time I returned home I could not make out anything my husband said On Monday, the doctor started me on 60 mg. prednisone and with three weeks I was back to normal in the left ear but, had roaring still left in the right (which I had not had before). Then on Aug 21 I woke up in the morning with roaring and in about an hour had lost all hearing. Again I was put on 60 mg. pregnisone and when that didn't work received the injections in the ear for five weeks and am now in my second month of Methotrexate. I was so bad that the doctor talked to me thru his stethoscope. I had the ear pieces and he had the end. Now he can sit at his desk and talk to me. If a person is more than four feet away from me I can't hear them at all. I can hear music, at least not normally. It sounds all distorted and off key. So, that's story. I'm sorry that you have had to join this forum, but it is helpful to know that we are not alone. There are alot of people out there with sudden hearing loss. Thanks for your interest and I am going to talk with my dr. appt. the Methotrexate and possibly ask him to put me on anit-virals which he has been reluctant to do. Thanks again and good luck to you.

Hi jakeabe: it's almost certainly not coincidental that your hearing is improving while taking methotrexate. It's a powerful drug and when it works it usually works well. Statistics regarding it's benefits don't matter much if it is helping you, because for you as an isolated study, it's 100% beneficial!

I am finding this forum very helpful--almost addictive--to find out about the issues not in the medical books and scientific literature. I mean, who knew? I can only hope that some of the ENT 'super specialists' are tuned in, but probably not many.

You write well, with intelligence and compassion, and for that I thank you.

Hi All
I came across this medical paper on SSHL. No cause/solutions but a context on the overall scale of SSHL for both you and family/friends to be aware of. I think it was a Brazilian paper originally so there is some text lost in translations. It is informative. If you have sourced other web-based articles, I would be interested in reviewing... please forward links to me.
I have the SSHL 2.5 years...no change / progress to report.

http://www.arquivosdeorl.org.br/conteudo/acervo_eng.asp?id=4...

Thanks Edisoar for that very informative and interesting paper.
The paper indicates that SSNHL was first described 62 years ago. That surprises me a lot because my GP (he is about 55) had never heard of SSNHL neither did my Pharmacist and he too is about 55. So I thought that years ago SSNHL was a rather rare incident and was not talked about in medical school.

Take care
Hope01

To Shortcake

How are you doing on the anti-virals? I am somewhat better with the Methotrexare. I can hear someone who is right next to me which is a big improvement and I can now hear music although it is still distorted. Am hoping that you are gaining more hearing each day with your new treatment.

I wonder if sudden hearing loss can be connected to damaged hair cells. Can MRI reveal damaged hair cells?

jakabe - thanks! My hearing seems to be holding steady - it was 'within normal range' last time it was checked. It's still not exactly the same as the other ear but totally good enough! Also I did have some fullness and tinnitus creep back when I was on vacation last week and not following the low sodium diet that is recommended for what I have (endolymphatic hydrops) but now that I am home that has returned to where it was before my trip.

eltonlam - no, an MRI can't reveal damaged hair cells. I think sudden hearing loss can have a number of causes. Perhaps that is one of them.

Jakabe - just noticed your post above that said you were going to ask your regular MD about antivirals. Any luck with getting a trial prescription? And if so, how is it going?

Thanks shortcake for your reply.I was confirmed to have sensorineural sudden hearing loss. Now I encounter balance problems such as dizziness and unsteadiness. I wonder if SSHL must be accompanied by balance problems. Would heavy metal poisoning cause hearing loss? Any comments would be appreciated.

Been a little over 4 months for me now. No improvement in the hearing or tinnitus. I also can't seem to get rid of this foggy head feeling I have had since the onset of the hearing loss. It's tough, but I try to stay positve.

Danny2000, the 'foggy head' feeling does not last forever but it can last a long time. It has been almost exactly 3 years since my SSHL and the foggy head lasted for the first two at least - it is weird and annoying but it does stop and maybe for you, with any luck, it won't take so long. I think it is related to your brain adjusting to the changed signals that it is now receiving.

eltonlam - SSHL does not have to be accompanied by balance issues and indeed i did not start to experience balance issues until several months after the initial SSHL, then i had several bouts of sever debilitating vertigo and a general feeling of listing to the effected side. this went on frequently for several months but my episodes are now very rare and short-lived. The balance organ is believed to 'burn out' eventually and we compensate then with our other ear and vision. this can lead to a diagnosis of Menieres which i did receive from one consultant but none of the others agreed!

JeWel41-thanks for your information. I know that SSHL is different from conductive hearing loss. I sometimes feel some pain in the affected ear when the pitch of tinnitus and the volume of the noise is high. I do not know why I have such feeling. I wonder if the tympanic membrane is really affected by the high pitch tinnitus.