Sudden Hearing loss _{Page 71 of 105}

Ed,

Here's a link you might find inspiring. It's a lecture by Evelyn Glennie, an orchestral percussionist who took up percussion _after_ suddenly going profoundly deaf at age 13.

http://www.ted.com/index.php/talks/evelyn_glennie_shows_how_....

Best,
Ted

Here is another article that everyone may find hope in reading....

http://news-service.stanford.edu/news/2005/november16/med-he...

Elaine...
Thanks for the article. Good to see some hope.

I have scheduled the trans-tympanic steroid treatment, and hope to hear some good news afterword. Had another hearing test done, and there doesnt seem to be any kind of significant improvement. Being that my hearing loss was profound, the doctor explained that a small improvement in the results, would not necessarily mean I could hear. While I await any results, I will be trying to digest all I have been learning about hearing loss, and things I can do to help me cope. Much luckier than some, as I still have hearing in my other ear. Life will go on... and I will cope. My heart goes out to all who are affected by hearing loss, and hope that the news that Elaine has shared does bring some hope and promise.

Ed

Hi All hEARing lost souls, Just touching base. 9-14-08. Totally deaf went out on diss. for two months. Today, 1-31-09 I'd say I have 50% hearing. Livable tinnitus. I don't think about it anymore. I just have a bad side. I'm happy, and healthy.Hope that you all out there can cope and get on with life. Catch Ya, Trish

Ed,

Having started out with profound loss also, I can tell you that a small improvement does make a difference. With a little hearing, you may not be able to technicaly 'hear', though just detecting sounds on the bad side makes a big difference. The only downside when I regained some hearing is that voices sound like they come from some computer space alien. But space aliens is better than no aliens. Get the shots and hope for improvement - even a little!

Trish, glad to hear that you are doing all right. Yep - we all have a bad side, but the core is still good !

Cheers,

Mark

Hi All hEARing loss souls, I failed to mention that every three weeks or so...I seemed to get a differn't kind of tinnitus.

Lately I am sharing my brain with ' The Rain Forrest'. It is very calming.The sounds are mild and like waterfalls, crickets, birds. s t r a n g e but, calming.This tinnitus seems like it's getting weaker as my hearing gets stronger. I sympthise with you souls who just came down with the virus. The air conditioner sound was the worst. It gets better. Takes time. Don't panic...Hang tough. Catch Ya, Trish

Hey gang,

Well, I started off 2009 with a pretty bad cold. I passed it to my girlfriend and we collectively spent about 3 weeks in bed.

About a week or so after I was feeling better, I was noticing a muffled sound in my left ear. Almost like airplane ear that would not pop. I work in the music industry so I'm pretty sensitive to any changes in my hearing as I use them all day long listening for slight differences in music mixes.

I went to my MD on the 22nd and they diagnosed it as 'ear wax' and proceeded to user a cheap water irrigation machine to clear them out. They sent me home saying they looked good and I woke up the next day even worse. I called and got a recommendation for an ENT that day and luckily was able to slide in. Dr. Matt Speyer here in Nashville examined me and did not notice any fluid that would be causing ear infection or any wax for that matter. So he then told me about this virus that he saw go around a few times a year that caused SHL. He went ahead and called a colleague to perform an emergency hearing test that afternoon.

I was sitting in the waiting room freaking out after the whirlwind of somewhat vague news that had been hitting me for the last 48 hours. The audiologist was pleased with the test results and did not feel that I had sustained permanent damage at that time. She did notice a little stiffness in my left ear drum.

At that time I went back down to the ENT and he started me on a 12 day oral steroid burst, valtrex, and Rinitidine I think it's called (?? for my stomach perhaps).

So, here I am, on the 10th day of the treatments with no sign of change. No worse really, and in fact there were moments I thought it was better, but alas no. I am going back in tomorrow to see the ENT again who wants a second opinion audiologist to run a test as well. I will say that they seemed to act promptly and took it seriously, maybe because of my career as well. I still feel a little ridiculous simply because I am not even sure what the virus is actually called. It appears that they may not be certain on which virus is causing this as well. It's just strange to be suffering from something and then be treated for it, but technically I have not drawn blood or been diagnosed with 'having this virus'.

So I'm optimistic but scared to death at the same time. It will be interesting to see what happens tomorrow. The stories on this site are spooky at times, positive at others, but similar in many ways.

Oh I did forget to mention I have been drinking a lot of pom juice as I read in some random article they were treating this with vitamin E and other antioxidants. Anyways, I'm sorry for the rambling. It's been a frustrating month and start of 2009!!! Thanks for listening.

-jesse

Hi Jesse, Are you deaf? Do you have tinnitus? the loud sound of a hair dryer / air conditioner in your bad ear? If not, you will probley be ok. Alot have had worse . the loud tinnitus is the junk sounds of your brain,-Trish

Hi, updating my SSHL left ear, 6/23/08. I bought programmable digital open ear hearing aids for both ears on the internet that include the software and hardware to program them yourself. My right ear has mid and high frequency losses - the aid fixed that very well. M left ear (profound SSHL) now hears distorted sounds with the aid, and I can decipher much of the speech I hear in the left ear. The best part is I now can tell where sounds are coming from, and cars can't sneak up on me when I am walking in the parking lot. My hearing loss has not changed since my last post, but the hearing aids exceeded all my expectations and have made living with SSHL easier.

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Hi everyone,

I haven't been on this forum for a really long time. I've been overwhelmed with stuff to deal with in addition to the sudden hearing loss in my right ear. When I lost the perfectly good hearing in my r. ear in the span of an afternoon nap last July, like everyone else, I took prednisone and it helped by protecting my left ear and allowing me to regain some very low sounds in my now mostly deaf right ear.

Well, it turns out that prednisone may be difficult for me to take as I may have thyroid problems. I have an appt. with an endocrinologist for a persistant sore throat just behind my adam's apple (i'm a girl but I guess it's still called that.) I'm pretty freaked out because it makes my jaw and left ear hurt too. Apparently prednisone can be hard on the thyroid and people with hypothyroidism. Everything is so complicated!

I go to the mosquito ringtone sites to check my good ear quite regularly as hearing loss from various causes will often show up first in the ultrasound frequencies. I know I lost some higher frequencies in my good ear too last summer. I can only hear to 13 Khz. now. My kids complain when I play these high pitched sounds because they are painful. But, to still hear the same each time with my good ear is somewhat reassuring.

I want to address Jesse's post by asking him what hearing loss/tinnitis he has. Apparently the kind of viruses that cause sshl are viruses such as the herpes virus which is easy to catch from sharing a glass etc. They are often subclinical which means that they would be at undetectable levels when doing their damage. People who have a viral meningitis can end up deaf. You may not even know that you are sick but just have a world class headache. I did when I took the nap from which I woke up deaf in one ear last summer. I also took aspirin for that headache and some people are sensitive to aspirin. Additionally, I had been exposed to the class of antiobiotics called aminoglycocides during that time. Many factors could precipitate an SSHL. But, subclinical level viruses are considered to be a primary cause.

Well, I've written enough for now. I will look for a reply from Jesse. I am glad to see that some of my favorite contributors are still on this forum. Hi, MarkLM. I hope you are doing okay and can still enjoy diving. You are braver than I!

Frogs

Thanks Elaine G,

that really is a hopeful article! Very scientific. Stem cell research is controversial but for people like us and people with things like spinal injury it's the big hope. According to this article there are no deaf birds which means that regeneration of the cochlear hairs (whatever they are called) exists in the genome of vertebrates (includes humans of course.)

Sounds like the research has about 10 or more years to go but sometimes science jumps on to the fast track with a few serendipitous nudges. I'm hope ful! Thank you to everyone who contributes encouraging bits of news and info.

Frogs

sudden loss right ear 10/08 - within the first week of onset I took 10mg prednisone for 7 days and following second week of initial onset got three shots in ear (one a week for three weeks). I have 50% word recognition in right ear, alien/computer voice, and tinnitus ranging from hair dryer/jet engine to summertime bug sounds.

Saw my ENT today for monthly follow up visit and he mentioned I may have hydrops (not meniere's as I do not have vertigo) caused by scar tissue from a stapedectomy I had in the right ear in January 2007. He prescribed 50 mg of Neptazane (a diuretic) to see if that helps. Has anyone tried this approach or does anyone have any experience with Neptazane?

Hi All,

Thought i might add to the growing wealth of info on the Forum.

Thanks to everyone for sharing their experiences, it has certainly help me understand the situation much better and provided comfort.

Summary

27 year old male, fit, healthy diet, spend a lot of time in the water, some snorkelling (no more than 15ft) but no diving.

May 2008 - SSHL, left ear, antibiotics first then Prednisone 3 weeks after onset. (No vertigo or nausea)
Feb 3rd 2009 – SSHL, left ear, completely deaf, Prednisone within 12hrs + Vitamin E (No vertigo or nausea)

Detail

Here goes. I first had SSHL in April 2008. I was in Thailand and took a snorkeling trip (not diving) and when i got back on the boat i felt like i had water in my left ear... fullness and some tinutis, no vertigo or nausea. I went to a local doctor and they told me to take some ear drops. I got home about 4 days later and went straight to the doctor. They suspected i had an ear infection and prescribed some antibiotics.

I had to travel to India the next week and did so without any pain. The fullness had improved by the time i got back but not the tinutus. I went to see another doctor who sent me to an ENT. The audiogram showed that i had perfect hearing in the SSHL affected left ear until the last two higher frequency ranges where it dropped significantly. This test would have been 3 - 4 weeks from when i first experienced the initial SSHL.

I took oral prednisone (50mg x2days, 40mgx2days, 30, 20 , 10). The tinutis subsided and was still present but i just didnt pay any attention to it and hence didnt notice it too much.

Just this past Tuesday Feb 3/09 i woke up and had complete SSHL in my left ear (the same one) almost 7 months later. No dial tone when i put the phone to my ear. Couldn't even hear the sound of my own fingers being rubbed directly next to my ear. Completely freaked out.

I went straight to the ENT who prescribed the same course of prednisone. I am 4 days in and would say i have about 25% recovery (Thank god!) with fairly prevalent tinutis.

I asked about the injection of steroids but he said that there was not enough good conclusive evidence and that he would like to try to rectify with oral. His thinking is that if we can manage without injections then if it relapses we know that oral steroids can be used again if it relapses in the future. Should we not see substantial recovery within 2 weeks then injections here we come. I am happy with this approach as it makes sense to me.

For those who have been following the oral vs injection of steroids, a very crucial study has just been completed in the USA and a report is due in March. ClinicalTrials.gov identifier: NCT00097448

My concern is that many people are talking about much higher doses, for a longer period of time of oral steroids than I am taking… Also, im wondering if people think that the relatively short depths when im snorkelling could have played a role in both instances.

Cheers Marc

Hello Marc,

Here's my take on the diving. I have made 1000+ dives in my life and snorkeled about a zillion times - ofter to relatively deep depths of 40+ feet. My hearing was perfect - until it wasn't. My good ear is still perfect. Diving can certainly cause sudden hearing loss - though this loss is due to rupturing an ear drum. You would know it immediately and the ENT would likley see damage. Your first loss could certainly be from the snorkeling but not the second time. (15 feet is plenty deep enough to damage an ear drum).

Regarding the amount of prednisone, it is certainly less than the normal amount. It seems that 60 mg / day for 14 days is much more normal. However, I don't know if the any doctor really knows the correct dosage - or if the 60 mg level is just some untested standard that someone came up with years ago and everyone blindly follows. I guess I would say take more - just because the rest of us did. (There's the blind following the blind !) And that's assuming that your thyroid is OK (read Frogs entry above).

Frogs - sorry to hear you story continues. I hated the prednisone, but at least the stuff seemed to clear out of me quickly once I stopped. Let me know how things go.

Good luck to all,

Mark

Hi Aussie, SSHNL, Mark and everyone,

Aussie, you organized the description of your hearing loss experience really well. The very fact that your report is so well organized just further underscores the the fact that SSHL is very complicated with many possible contributing variables and not perfectly understood by anyone, although progress is slowly being made.

That's why good specialists treating sshl often use the 'shotgun' approach on us. They just treat it like it might be anything and everything. I guess they feel that it's better to slightly overdose with prednisone than underdose during that critical window of time after the onset of SSHL. My sister has Crohn's disease and has been taking steroids for years. She has taken much higher doses than the 60 mg.s we are typically prescribed. I have to say that I have A LOT more sympathy for her moodiness now that I've taken prednisone in big doses. By the way her thyroid has given out on her and she has to take thyroid medication. It runs in my family but prednisone might be clenching the deal for thyroid trouble. I won't know til I see the doctor next week.

Aussie, what antibiotic eardrops were you given last spring? Incredibly, people are given eardrops from the mycin family of antibiotics (aminoglycocides). This may be okay unless some gets into your inner ear either from your bloodstream or directly, then it only takes 'minute' amounts to KO your hearing (although if in your bloodstream it's usually bilateral-both ears.) Any aminoglycocide damage is permanent.

Okay, I write these really long posts, but whenever I see an interesting post it gets me started. You already answered the question that I want to ask everyone on this forum about health. You are healthy and you had perfect hearing before this last spring. MarkLM says the same. I wonder how many people here consider themselves to be healthy with healthy lifestyles, or, more on the sickly side? I had perfect hearing (until I didn't as MarkLM said)but I do have medical problems recently. Okay, I'm done! Thank you.

Sincerely, Frogs.

P.S. SSHNL I will look up hydrops because the ear I lost was an ear that had slight scarring from rupturing twice.

We all say that we are healthy but, don't forget this is a virus. You can never get rid of a virus.

Hi again Aussie,

I've been thinking about you since you are only 4 or 5 days into your 2nd and most complete sshl. I don't want to write anything that isn't good info. I doubt it has anything to do with any antiobiotic you were given last sshl. You would likely have had a hearing loss due to that within 24 hours to a week...much more likely something to do with snorkeling pressure changes. If you've read some of the very early posts there was a guy from Europe travelling and doing some kind of diving when he lost the hearing in one ear. The old posts can be informative.

It may be a 1 2 punch kind of thing. Your ear is already touchy and then there is some added stress such as a virus or who knows. I don't think it is co-incidental that the ear I lost is the same ear that, years back, ruptured twice due to sinus infection (very painful..blood on my pillow) over a period of 2 years Each time I lost my hearing for 2 weeks. But, got my hearing back completely each time. I think that my right ear was already vulnerable when a combination of things happened. They say rarely (something like 15% of the time?) do sshl sufferers know of one single cause for their hearing loss.

Anyway, since you are in this precious window of time I would definitely be taking higher doses of prednisone. You should be taking 60 mg.s at the outset for a number of days. It seems like the number of days of 60 mg.s prescribed varies from person to person on this forum. I still have my old bottle 'Take 3 tablets by mouth every morning for 4 days, then take 2 daily for 4 days, 1 daily for 3 days, then one/half daily for 3 days' I had 25 20 mg. pills in all and there was a half pill left, which I took. There are risks with taking prednisone but even though I had side effects I'm glad I took it. ANY hearing I regained is valuable. The first days after my sshl I couldn't hear myself scratch behind my ear or swallow. I couldn't FEEL myself swallow on the right side (and a lot of other effects.) So I can really relate! It truly sucks. Get a dr. who'll do what is needed for you if your present one doesn't, right now. I hope you get your hearing back.

Best luck, Frogs.

Hi luv2ride,

it depends upon what virus you are talking about. You can be basically healthy and catch a virus. Some viruses stay for good (going dormant)like the one that causes chicken pox i guess.

Frogs

Hi All
I was back to an ENT on Friday for a second opinion. He indicated that with severe vertigo, nausea at the outset etc that the likliehood of hearing retuning was non-existant. I expected this so nothing new there. However, I am curious on one aspect of SSHL which I hope you can assist. Is there a predominant ear which is affected by SSHL? To me, it appears to be the left ear but I would like to confirm it. Would people mind either posting your result here ?

From what I've read here there are 2 types. One with veritgo and nausia.the other deafness with severe tinnitus. (both suffer tinnitus) I'm comming up on my 6 mo. anniversary. Started taking 2 ginko pills a day 3 mos. ago. Changed my diet NO ASPARTINE, sugar,or chocolate.All the low calorie foods that I ate were drenched in aspartine. Every week I have improvement to the point that I'm excited.My timmitus is very low and my hearing continues to improve. I have no fullness at all.I have a calming lite rain forest that is very low in my middle ear. Sounds like crickets and birds in the night. VERY LOW!!!!!!!!!!!!!

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I am a 45yr old male with no history of hearing problems. Approx 1 month ago sounds in one ear became distorted - robotic and lower in pitch. Sort of like a cartoon alien sound. With this I have a low-frequency rushing tinnitus and a fullness feeling in that ear. My low frequency hearing is also about 50dB down.

Went through a series of ENTs and Otologists. ECOGs test confirms endolymphatic hydrops (pressure in coclea). I just completed 3 inner-ear stereoid injections.

I would like to participate on this forum to provide you my progress.

*** Question:
have any of you experienced sound distortion in the affected ear (robotic, lower in pitch). This bothers me the most. Thank you.

Hello g-davis and welcome to the forum. And of course, I am sorry that you had to find this forum.

I am a 45 year old male with no previously history of hearing problems - so I can relate ! Unfortunately, the alien ear syndrome is extremely common with SSHL. And it sucks. I have slowly adapted and I continue to adapt, but I don't think it will go away. The fullness has definitely decreased. And I'm not sure if the tinnitus is less or if I have adapted. Whatever the case, it doesn't bother me too much. For me, the worst problem is I can not deal very well with loud noises. I was at a construction project last week with air compressors roaring, power tools screaming and two or three people talking to me at the same time. That was not fun.

Question for you. What is endolymphatic hydrops? I haven't heard that term thrown around before. Perhaps what you are dealing with is a bit different. Keep us posted on how the recovery goes.

Best of luck,

Mark

Hi all...I haven't written here in a while, although I've kept up with the posts. I am now 4 months into my profound hearing loss. The tinnitus sounds like high-tension wires and is usually bearable unless I'm around loud noises (which are very hard to take). I still have trouble using the telephone (or headset) directly into my good ear...it's just too intense. I am still very dizzy...to the point that the ENT sent me to a neurologist. Three doctors now concur that this SHL was probably due to internal shingles that just never erupted. I am now on Valtrex for the virus (just for a week) and some anti-seizure meds for about 2 months to try to break the cycle of pain in the L side of my head (ear/temple). The fullness is very much still there. I did realize in speaking with the neurologist that 2008 was a year of major stress, which definitely could have triggered shingles. Of course, there is no way of anyone knowing if shingles really were/are involved. I am adapting, but this is still very life-altering. Work associates and family members are getting used to either being on my R side or having to repeat themselves. I am looking forward to getting my Baha in the spring just so I can hear things going on on my L side. Now, if we could just do something about this dizziness that keeps me holding onto walls, statues, plants, people...

Mark, 'endolymphatic hydrops' is a higher than normal fluid pressure in the coclea, better known as 'Meniere's'. It appears I have this without the vertigo. The symptoms of the affected ear: low-freq tinnitus, sound distortion (the worse part), and pressure/fullness feeling. I am lucky to have found this forum, and would appreciate any feedback. I have already read the other 72 pages of this thread.

Hi - I ahve been reading the posts here for last few months having recently lost most of my hearing in my left ear in a matter of 8 hours on the 6th Nov. Is there anyone else from the UK - I can find very little about SSHL in the UK. My experience of the medical profession here is one of - tough get used to it. I attended A&E the day after I lost my hearing and waited 6 hours to be told by a junior doctor - no sign of infection - come back to ENT in 5 days. I went on net and saw that this is an emergency and attended ENT Casualty ina diferent hospital first thing on the Monday morning. Audiogram was flat line at 90db loss. Was put on 40mg prednisone for 5 days and a 5 day course of vaso-dilator tablets. No improvement after this. Had an MRI scan (at my own expense as waiting list here is 3 months at least) and it was clear. I have had improvement in high freq sound back to near normal. means I can hear the hairdryer or shower or some hi pitched sounds on the radio, but not speech. I have constant tinitus which has eased down. It was so loud the first few weeks I didn't sleep and couldn't read or watch tv or concentrate on anything. It is now like a constant aircon sound with running water and odd alien noises - but bareable.The hospital have told me to come back in six months for my next hearing test. No advice about anything.I do worry at times about my other ear going same way. I have tinnitus in it - very high pitched hum but hearing is normal - infact very good.