Sudden Hearing loss _{Page 85 of 105}

inchman

did you do prednisone 60 mg a day for 12 days and then taper down and the ear shot must be once a week for three weeks in a row and it must be decadron, if not then i would try again, it hasnt been that long and there is a slim chance, if your doctor says no then get someone that will, also a aniviral or antibiotic is worth a shot, i did all three and i got mine back but maybe i just got lucky, my prayers are with you.

inchman - I agree with nitrams, you may want to get a second opinion, and quickly, there might be more someone would try. Also there is a lot of talk about antivirals being of help for this. Do a google search you should find something. Of course it depends on the cause - but since they never know the cause it seems worth a try. I'm about to start taking Famvir to see if it will get back my hearing (low tones, right ear).

shortcake, I saw where you are going to start Famvir. That's great. Did you find another doctor? I went to a rheumatologist on Tuesday and they started me on autoimmune drug called Methotreate. It's a nasty thing, but they think it might work. So here I go again. Hope the famvir works for you. I'm still trying to get my doctor to give it to me. They want to try this first as they think mine might be autoimmune. But, I really think it was viral. Here's hoping the famvir works for you.

Glad I found this site - I had SSHL Feb 08 (flew with an ear infection) and ended up totally deaf in left ear and with one balance organ knocked out, the balance has been harder to cope with than the ear to be honest. Also had tinnitus for 20 years, which is now harder to block out of course. I went through some bad times last year, especially when I lost my job at the same time (was a really bad year 2008!!!) but got life back together now. Now and again I can't stop myself from Googling to see if I was alone (doctors jsut kept telling me how unlucky I'd been.) Anyway, that was the griping bit... on a positive note I just get on with life, everything's fine but now and again I do get this really annoying tapping sound (like a nerve twitch) in my deaf ear. Quite wierd to get any sensation out of it... does anyone else get that? Oh and also I've never been on a plane since, and I don't intend to again!

jakabe - actually it was the rheumatologist I saw who gave me the famvir prescription. I brought my research with me and discussed it with her. At first she said 'it's really not my area, but here's how I would discuss it with your doctor' and gave me some pointers. I could tell she thought it sounded logical. Then, after discussing my bloodwork and some other stuff, she said, 'you know, what I could do is give you the first month of the famvir and then if it helps, you could speak to your doctor about getting the remaining 2 months prescribed.' I think part of why she did that was that my bloodwork showed some antibodies which could point to a viral issue...also I'd had a sore on my lip just before this all happened in May. She did send me for additional bloodwork so if that comes back showing autoimmune I'll have to consider that more of an issue. I hope the Methotrexate works for you - it is nasty stuff, as you say. But if it helps, that would be great!

So far the famvir isn't doing anything. I started it on Tuesday so it hasn't been too long, although some people do have success this early. I'm going to stick it out the full month and see! I see my ear doc in about 3 weeks (after I've been on the famvir for 25 days) so any improvement should be apparent on my audiogram then.

Famvir update - I am now on day 18 of the antiviral. At about day 10 I started to see some improvement, and by day 12 it was clear that my hearing was getting much, much better. It's still doing well! It fluctuates slightly throughout the day, but before the meds I could barely hear the dial tone when I picked up the phone; now I can hear it very well! Not perfectly, but a huge improvement. The noise sensitivity and tinnitus, while not gone altogether, are getting better too.

I will STILL have to convince my otologist to continue my prescription (the protocol is 3 months and my rheumatologist was only giving me the 1st month) but I am hopeful he'll see the improvement and attribute it to the antivirals, as I do. Yes it could be a coincidence or something else, but it really seems to me to be related.

Hello, I am currently pregnant and have total loss in my left ear....i have read a couple posts by other pregnant woman and was wondering if the hearing came back after delivery?? Could this be just a pregnancy induced issue for us?
thanks

momtobe12 - yikes, that's not one in the pregnancy books! I don't have any answers for you, though it does seem plausible that hormones would play a part. If you haven't been to an otologist, though, you should go get checked out. I don't know if they can give you prednisone while pregnant (I doubt it) but they might want to do intratympanic shots since those are local and go directly to your ear. Good luck!!

thanks....i did go in on friday and they gave me the prednisone until i could get in to the specialist on monday to get the shot. It actually has worked already a bit but i dont like the idea of taking steroids while pregnant. My ob said it was fine especially since i am due in 2 weeks but im still not feeling good about it.
Do you know what happens once the pred is stopped? does the hearing loss come back ?
This whole thing just seems so weird to me considering i have never had any ear problems until i got pregnant, i am a 26 yr old otherwise healthy woman.

Also, have you had the shot in the ear, what are the side effects of the shot vs. oral?
I am so paranoid about the side effects of the prednisone even though i will only be on them for 10 days..do you think i will have adverse effects in this short amount of time?
Sorry for all the questions but i have read way too much and now am thinking way too hard about all of it:)
Thanks for any info

hi momtobe-

I wouldn't advise prednisone . I took it for 3 different sessions for my hearing loss and it brought it back but then when I would wean off, it would go out again. That drug will ruin your adrenal glands if taken too long as well. I'm surprised they have you taking it orally while pregnant. I'd get off now. If they want to give you steroids, then ask for shots in the ear. At least that's not systematic and won't hurt the baby. It's really crazy to take prednisone while pregnant. It's definitely affecting the baby. At least get a second opinion. How high is the dose of prednisone anyway?

well pregnancy certainly didn't factor into my unilateral overnight complete hearing loss that has lasted now for over a year and half but I've tried to figure out anything possible that may have triggered this. No ear problem before. Hormones is an interesting topic however I have never thought about but I did have an adrenalectomy in 2000 and have had some issues with cortisol levels. I am wearing a custom bite plane for a month now but it only seems to aggravate the different sounds in the ear and make it feel more stopped up. The intratympanic shots never made any difference whatsoever and I began those at Emory within a week of the acute onset. I'm beginning to really get very frustrated that there are no physicians, even Emory ENT's that seem to really be interested in investigating this or approaching treatment with any aggressive measures. It has truly been one of the most frustrating things and you go through that frustration to then thinking you could have something worse happen to you. Some days I hardly think about it but some days it really is aggravating and the effort to act normally in large groups of people seems overwhelming at times. Anyway, the hormone theory is one I hadn't thought of and I guess it will not really matter because I'm at a loss as to who in the medical profession would really give a hoot to take the time to listen to all our thoughts, fears and frustrations. Good luck everyone, keep on communicating.

momtobe - I have had the shot to the ear. I do think this is worth trying. They will do one, then if there's any improvement, they should do another a week later, and I think they do up to 4 of them a week apart. In my case the hearing that I regained disappeared again a week or so after my last shot. However I know others have had the shot (or oral prednisone) and their hearing returned and stayed there. So for some it does work.

It's up to you about the oral prednisone. I think it's encouraging that it's helping some already. That makes me think the shots will help too. I'm surprised that your ob said it was safe - but as far as what passes through to the baby your ob would know better than I! (Remember if you do decide to stop at any time, you still need to wean off of if or it will wreak havoc on your system).

I'm so sorry you are dealing with this right now! You have so much going on with the baby almost here, this is the last thing you want to deal with. I do know it hits all ages (I'm 35, otherwise healthy) and it seems to have many causes.

Oh you asked about the shot and side effects. It's definitely WAY easier on your system as it is not systemic. It can make you a bit dizzy that day. Also it can leave a tiny hole in your eardrum that takes 4-6 weeks to heal, but that was not a big deal at all when it happened to me (just no swimming). You said you were going in monday - did you mean today or next week?

Do you have any other symptoms? I have fullness in my ear and tinnitus. Some people also get dizziness.

Hello, Thanks for your positive attitude shortcake.....sometimes i dont know if i should even read these things because it makes me feel worse.
I did go to the specialist today at the house clinic in los angeles. they decided to keep me on the oral prednisone since i am having success....my hearing has improved about 80% from last fri. I still have a very loud ringing and sense of fullness but am able to hear much better. I do get very dizzy but that has also improved with the steroids.
I have been having dizzy episodes for probably the last 3 months and my ears would feel plugged and ring a bit but never loss of hearing until now.
The best guess they can make is that maybe due to pregnancy my fluid levels are very off and may have caused menieres...the question is will is resolve once the baby is born?? we will have to wait and see.

I have had 3 opinions now on whether the prednisone is safe while pregnant and they all say yes. It is often given to pregnant woman for various things including infertility and severe breathing problems.....it is also used when a mom goes into pre mature labor.

So i do feel better about that and i trust my OB wouldnt say to go ahead with it if there was a risk.....she actually said there is a very small chance it will even cross the placenta.
I will keep you posted but i have to say the steroids are helping quite a bit and i have had very limited side effects...night sweats mainly.
I am just praying it all goes back to normal after the baby is born...i know being a mother is a sacrafice but losing your hearing is a little extreme :)
If anyone is interested the dosing i was given was
2 days 50mg, 2 days 40mg, 2 days 30mg, 2 days 20mg, and 2 days 10mg, with a final day of 5mg.
Thanks for your reponses and again thanks for your positive outlook.

momtobe12 - I'm so thrilled that your hearing is coming back! And you are in great hands at House - they are the best. People fly there from all over the country. I haven't been there myself, but it is Dr. Derebery there who did some research on antiviral medications for Meneires disease and I am using her protocol of antivirals with success so far.

How interesting that they think it really could be the pregnancy. I hope that after you deliver you don't have trouble with this anymore.

Hello all,

It's been a few months since I posted. Just wanted to say hi and offer progress report. Good to see so many of the same people posting! Sad to see all the new cases since I last logged on. Keep up the hope, folks - every case is different.

My one-year anniversary falls right around now. My hearing hasn't improved despite oral and intratympanic predisone (on the late side, but within the first two months), chinese herbs, five weeks of 2x/weekly acupuncture, and a three-week water fast. My doc wouldn't prescribe antivirals and I didn't push him - there wasn't so much talk about them on the forum at the time.

One good thing: In the past month, the tinnitus has been much better. It's back now, but it was nearly gone for about two weeks. And when it came back, it wasn't as loud as before. No telling how that will change, of course, but it is encouraging. The period when it was at its lowest was blissful.

Wishing you all a quick, easy recovery and the persistence to keep working toward it,
Ted

Hi Ted,

Nice to 'see' you again. Sorry you haven't had a ton of improvement - though the decreased tinnitus is good!

Keep researching about antivirals and see what you think. I started them about 6 months in with great success.

I was actually just coming back to the boards to post that I just had an audiogram (my first since starting the meds) where everything was back in the normal range!! It's not perfect, but so much better. And my hyperaccusis is nearly gone, and my tinnitus is lower.

Hello, just an update that hopefully provides a little hope. I have all my hearing back in my ear after a round of prednisone for 10 days. Just praying when i wake up everyday it stays this way:)

momtobe - that's great news!! Best of luck to you.

I'm a pediatrician and family doctor who experienced sudden total sensorineural hearing loss in one ear, about 3 months ago.

I've tried literally every treatment ranging from intratympanic steroids to acupuncture to herbs and homeopathy, but to no avail.

I've been reading about the German doctor, Dr. Weldin, and his laser light therapy, on this site. He is generally getting thrashed, but honestly, at least theoretically, he makes sense. So I wonder if anyone has had any experience with his treatment or knows someone else who has had experience? Please share if so.

Also, my hearing loss started 2 days after a dental cavity repair on the same side. Since then I have found 8 more cases of hearing loss after dental procedures. Has anyone in this forum experienced something like this.

Finally, I note Rhonda was concerned with aural fullness in re good ear. I get that too! Especially driving with the window a little bit down, or going from inside to outside, so it probably is related to pressure in some way, but who knows?

I just discovered this website. Wow! Thanks to all...

Thanks

39 year old man, musician, dad of 3. I lost my hearing on Friday oct 16th in my Right ear. Went to ENT Monday the 19th and he diagnosed me with SSHL and attributed it to 20 years loud music.My hearing test was 100% nothing. I was devastated... Went and got Predisone 60mg a day. I read about the shots and found a guy and got a shot Thursday Oct. 22nd, this guy was very apathetic. I asked him questions about Vitamins and Oxygen treatments etc. and he said it was hocus pocus.then while I was laying there waiting my 30 mins he was ordering lunch with his assistant girl...lame. AT this same time I started taking a good multi-vitamin, 400iu E 2 x a day, 1000 mg C, Lipo-flavanoids 1or2 3 x a day, Magneseum (just read somewhere to up it 1500mg a day), Garlic, Fish oil, and just started taking Zinc 100mg. and trying hard to keep salt intake down. Monday the 26th found another place. Silverstein Institute here in Sarasota Florida. They've invented a wick(Google Silvertein Microwick) that goes in a hole in your eardrum that you put the Steroid drops in yourself 3 times a day. The theory being its on the area more frequent than once a week shots. So I got one on Wed. Oct 28th. My hearing test on this same day I could hear low frequencies quietly and only 4% word recognition but I could hear her voice all scratchy and this gave me hope! This Doc not so sure its loud music that caused it because my other ear shows loss in the 4000 range typical with exposure of loud noises and would be a slow loss of hearing. He also injected another dose of Steroids as well after the wick was put in and I did a 7 day course of anti-virals just because. Nov. 4th I went back to make sure wick was in the proper place and to get another shot. I think I'm getting a little more volume back and maybe some mids to lows. Could hear Refrigerator hum, Hum of tires on road, and muffled voices near my ear but still full with some ringing and the R2D2 computer noise I've heard others talk about. I also get some clicking..this I concentrate on as the healing. my hairs waking up. Thats where I'm at today. I'm alot closer to God lately and am telling everyone to protect your hearing and all the treasures that we take for granted everyday. I have so much to be Thankful for but as a lifelong songwriter musician this is a nightmare. My best to everyone. Wouod love to hear more timeline stories of any type of recovery. God Bless us all!

Songdaddy - sorry you are here, but sounds like you are on the right track! I am hopeful for you.

I doubt it was loud music that caused this - glad you found another opinion as I think your 2nd opinion is correct.

I am on a 3 month course of anti-virals. My diagnosis ended up being endolymphatic hydrops (it's related to meneire's disease) and I've seen lots of research relating hearing loss & meniere's disease to a possible viral infection, but you need a longer antiviral course than just 7 days. So if the steroids don't work, you might consider talking to your doctor about a longer course of anti-virals. My hearing is now back to 'normal range' though it is not perfect, and the fullness and other annoying symptoms are gone. I don't know what will happen when I stop taking the meds, but I am encouraged.

Hi Shortcake. What an amazing story. I'm so pleased to hear of your improvement.

How profound was your hearing loss and how long ago did it start? I'm a physician myself, but I have not uncovered information regarding a prolonged course of anti-viral meds. Would you mind telling me who the doctor is who recommended the treatment? If you have any hesitation to do so in this forum, please just call me at 949-488-3721 Thanks very much, in advance.

Ed

Hi Songdaddy- I also had success with anti-virals and am still on them. I'm glad you are getting some opinions. Allergies can be another cause. I wish you well. I know how hard it is to go through!

Hi Ed, thanks!

My hearing loss was in the low frequencies. It was around 60-70db loss at the lowest frequencies, and then it sloped upward to about 40db loss at 1000hz. Above that it was normal. My speech recognition was always 100%. My loss happened in May of this year, so it had been out about 5 months before I began this treatment.

My doctor was actually really reluctant to try the antivirals, as was the Oto at Stanford who I had seen earlier for a 2nd opinion. It was the rheumatologist that my Oto had sent me to (to rule out an autoimmune cause) who looked over the papers I brought along and thought it was worth a shot. She gave me a month of meds to try, and then when my Oto saw the improvement he was willing to continue the course.

Please keep in mind that the research I have for antivirals is either for treatment of endolymphatic hydrops (which I have) or meniere's disease (which mine is closely related to). That said, I'm following the protocol of Dr. Derebery at House Ear Clinic in LA. She is not my doctor, but we are using her suggested treatment. Also, I still don't know what will happen when I stop the meds.

All that said, here is a link to a forum where this is being discussed in detail. You'll find links to articles and testimonials about using antivirals. I have no idea if it is helpful if you don't have endolymphatic hydrops - but it's a place to start reading.

http://www.menieres.org/forum/index.php/topic,22817.0.html

Hope that helps!
Rebecca

OOPS I POSTED THE WRONG LINK

So sorry - I just posted the totally posted the wrong link above. HERE is the link you want to look at for antivirals discussion.

http://www.menieres.org/forum/index.php/topic,22821.0.html

Sorry!!

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.