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SSHL recovery timeframe
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SSHL recovery timeframe

at what point does a person with diagnosed SSHL, who has already been treated with oral steroids and tympanic injections of steroids, give up hope of experiencing any further hearing improvement?
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Avatar_f_tn
Hi Brenda,
I would say never! I am dealing with the same question. I had SSHL in November. Left ear completely deaf. I was told there was a minimal chance of any recovery. I saw numerous ENT's. The recovery timeframe I heard differed with each doctor & seemed to be based on their personal experience with the few SSHL patients they had cared for. Most people seem to think there is a primary recovery time & a longer term recover time. My ENT's answers to your question have varied from "All recovery will take place in the first month" to "Primary recovery period of 6 months followed by slower recovery up to 18 months". I recovered about 30% of my pure tone hearing at around 6 weeks (moreso in the lower frequencies), then my word discrimination shot up at around 10 weeks. I continue to experience improvement in my daily functioning now at 4 months, although my hearing tests haven't yet shown another "jump" & seem to be fluctuating somewhat. I am confident that I will continue to improve & I really can sense very subtle improvements ocurring continuously. If you would like to discuss this more please contact me! It would be nice to hear from someone who knows what I'm going through. This is tough!
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Avatar_n_tn
     thank you for your feedback.  i haven't asked this question of my ent because he has already referred me to his affiliated business which sells expensive hearing aids.  in my mind, there is a conflict of interests in terms of giving me hope for improvement.  
     i, too, lost all my hearing in my left ear back in december and recovered enough over the course of treatment to be considered for a hearing aid.  i don't want to spend money on a hearing aid (like most insurance companies, mine doesn't cover hearing aids) if there is a chance i will gain all or most of my hearing back.  the information you provided was very helpful and encouraging.  like you, i sense that i've improved somewhat in recent weeks, but i'm told we are the worst judges of our own hearing (my ent's mantra).
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Avatar_f_tn
I'm glad to hear you have also regained some hearing! How much have you improved?

My low frequencies are between 10-50 dB, but my higher frequencies (hearing test 4 weeks ago) were 60s-80s. Word discrimination is 60-70%. I am still noticing some subtle improvements; throughout the day I will notice noises like a bird chirping and realize I couldn't hear them a few weeks ago.

I also decided to do a course of hyperbaric oxygen therapy, which is controversial. I did 20 sessions at 2 atm for 60min each. It was expensive, but I figured it was worth a try. Not sure if the improvements I'm noticing are a result of the hyperbarics or simply the natural healing process.
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Avatar_m_tn
Hi there,

I have just come across this forum and it has given me a little boost of hope.

Only 2 weeks ago i lost all hearing in my left ear with SSHL. I was misdiagnosed and it was about 8 days before I started my course of prednisolone. I have 3 days left on my medication but still no hearing in my ear. I currently have no word recognition and only hear buzzing with loud sounds in the affected ear.

My hearing test last week wasn't very encouraging, and i have been told there is only a small change of my hearing improving in the bad ear. I am so confused right now and don't know whether to try to except that i will never hear again in that ear, or to hold on and hope it might improve over the coming months !

I have read so many different opinions on recovery time and when to resign myself to the fact that its permanent. Its all very depressing and I am really struggling right now.

Just reading that you have had some hearing return after 6 weeks gives me hope that I still am in with a chance of getting a little better. Can you tell me what condition your hearing was at week 2 ?

I hope you continue to get better hearing returns for you...

Dave
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152264_tn?1280358257
Sorry to hear your story, Dave... that darn misdiagnosis. I was told "wax" and "Eustachian tube dysfunction" and not diagnosed for a month! Too late.

I had no recovery of hearing whatsoever but mine was caused by some traumatic damage, apparently, when I sneezed, so there may have been no hope for me from the beginning.

I would not get your hopes up, but you never know. You can adapt to one-sided hearing loss if it doesn't return, and there are some good solutions for it. I have a Baha (bone-anchored hearing aid) for SSD (single-sided deafness) and it works great, though it has minor drawbacks.
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Avatar_m_tn
Hi Nancy,

It seems so many doctors just treat this as a cold or something insignificant! I cant believe there isn't more awareness of SSHL!

I have been looking into the BAHA as it seems like a great option.Have you had the device for long? I do think the ear has got better over the past week, even some speech recognition when its loud enough, so this may mean i will be eligible for a standard hearing aid to amplify sounds instead of the BAHA. I wont have another hearing test for about 8 weeks, so until then I am just hoping each week brings even a little more hearing!

Thanks for your encouragement Nancy, I have really found this week (weeks 4) that i am at last starting to get my life back and the tinnitus is becoming less obvious throughout the day.

Dave
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152264_tn?1280358257
Hi Dave. Glad to hear you think you might be recovering some hearing. I hope your next hearing test will confirm some recovery! You will get used to the tinnitus--I was so bummed when I realized mine would be permanent, thinking, "Oh, I'll never get to enjoy the sound of complete silence again..." but that was a laugh, as now I don't even notice the tinnitus unless I think about it! It is loud enough that I can just perceive it over the humming of my computer, but still, it just isn't "there" unless I think about it. Amazing how the brain adapts.

Yes, GPs have NO idea about SHL... I was surprised when I started reading about it and found out it's supposed to be considered a medical emergency. But doctors aren't told that in their training. Most info about hearing loss--even the huge article for doctors on the American Academy of Family Physicians Web site--has NO mention of SHL. You'd think that GPs would have a little book to carry around with sections on different specialties (ENT, neurology, etc.) tagged "this is an emergency," but no. They are SOOOO concerned about possibly permanent deficits from, say, a stroke, so there's this huge stroke-awareness campaign, but possibly permanent hearing deficits are like, "so what?" I saw two different GPs, 5 days and 3 weeks after my hearing loss, and neither of them even bothered to do the tuning-fork test. The first one cleaned the wax out of my ears and ASSUMED the problem was solved--didn't even ask "can you hear better?" Admittedly I was at that time most worried about the dizziness that came with the sneezes, as I myself assumed the hearing loss was just some canal or other "plugged up"--I knew nothing about ears--but the doctors SHOULD have done some initial testing, that was their job!

I've had the Baha for 3 years now. I have an Intenso, but I think there are newer and better models. The Intenso works great for me. Like all hearing aids, I guess, it does cause feedback if I turn it up too high or touch it, but voices come through so clearly it's AMAZING! It's like hearing voices over the radio, but PERFECTLY CLEARLY. It is SO nice not to have to be constantly turning my head, switching sides with people, asking them to repeat, missing things, etc. I don't have to wear it all the time, as I can hear fine in small rooms with a handful of people and no background noise, but at work and in most social situations the Baha is a great help to me.

Good luck and keep us posted! :)
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Avatar_n_tn
Hi......just curious what type of treatment you received?  I flew home with a cold and sinus congestion and 14 days later the tinnitus started.   I didn't realize I had suffered low frequency hearing loss until the tinnitus started (which was two weeks after I realized my hearing was off) and the steroids did not work.  I had doctors tell me they had seen this take months to clear up but I am not at 11 weeks and nothing has gotten better....hearing or tinnitus.  To make matters worse I have been deaf in my other ear since the age of 7 so I am really up a creek now......1/2 of one ear for hearing.  I'm scared, sad, angry, anxious and afraid of what the future holds.  Yet all of these ENTs just look at you and say, "You'll have to get used to it."  That is not an acceptable answer for me.  There have got to be more success stories out there.  
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Avatar_m_tn
Just got diagnosed this afternoon w/SSHL.  Caught it pretty early, though.  Tuesday my hearing conked out on me suddenly at work (right ear), and I went to an Urgent Care facility.  The LPN had no idea and prescribed a Z-pack for me.  Next day, zero improvement and increased tinnitus - but no pain, correlating to no infection, so why the Z-pack?  Got in to see my PCP, who immediately and intelligently referred me to an ENT.  A few hours later I was choking down 6 prednisone tabs to start the therapy.  I'll probably go to Mass Eye & Ear for a second opinion, just to be sure, but I'm hoping that I caught this early enough to recover.  The stats I'm reading indicate about a 65% recovery (partial or full), and the timing does vary from weeks to over a year.  It's going to be an interesting ride - and a complete bummer to a musc lover like me :(.  Nice to know, though, that I'm not alone out here.  Carpe diem, folks - make lemonade with them lemons!
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Avatar_m_tn
I was diagnosed with SSHL in June 2010.  One morning I woke up and my right ear was blocked.  I knew something was not right, because I did not have a cold and it simply did not feel like a sinus blockage.  Went to the Emergency room and they quickly gave me some Prednisone and then I checked in for two weeks (in Europe...realize that this may be unrealistic in America).  After two weeks the doctor ordered I use the Hyperbolic Oxygen chamber.  This was a device similar which Scuba Divers use to decompress.  I did 5 sessions of this at 3 hours each session.  I regained about 50 percent of my hearing...from nothing.  But, now I had some really annoying Tinnitus.  A year went by and there was some improvement.  I would have good days and bad days.  Alot depended on how much rest I had.  I read and read everything I could regarding SSHL.  To me, I would say it was almost like a stroke in my ear.  So, I simply started taking any and all vitamins that promote blood flow, Gingko, Vitamin B, Fish oil.  I take these daily for the last year and now I am FULLY recovered.  I still take the vitamins.  Personally, I feel that SSHL occurs when bloodflow to the inner ear is obstructed for just long enough to cause the loss in hearing.  I am not a doctor, but my hypothesis has proved to be correct...I experimented on myself and now am 100 percent again.  You can recover from SSHL.
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152264_tn?1280358257
How's your ear by now?
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Avatar_m_tn
I am so happy to have found a place where others are discussing having to deal with SSHL.  I was very ill in December and woke up one morning with deafness in my left ear.  My GP told me it was congestion and to take sudaphed.  After two weeks I couldn't stand it any more and he sent me to the ENT.  Bingo, SSHL.  Went through the prednisone treatment with no improvement.  Unfortunately, I am a professional musician and this situation has left me devastated.  I get horrible headaches after practicing for short periods and hear weird overtones in my head confusing the actual pitches I am hearing.  Not to mention this terrible pressure I feel all the time.  I am horribly depressed, angry and scared about the whole situation.  After reading these posts it seems there still might be some chance of recovery.  It is frightening when your livelihood depends on your hearing...
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1740498_tn?1328966185
Hi and welcome to the Hearing Loss community.

I am so sorry to hear about your SSHL. Have you looked into surgical options? I wonder if you could pursue the Cochlear BAHA, Med-El Vibrant Soundbridge, or a cochlear implant?

Sounds like you are dealing with tinnitus as well as hearing loss. That is unfortunately common with sensorineural damage.

I can imagine how hard this loss would be. Have you considered visiting with a psychologist or taking medication to help you get through this change?

BC
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Avatar_m_tn
Hi

   Thank you so much for sharing your amzaing story .. i also have been in the same situation ..been diagnosed with SSHL for right ear .. Althought my hearing loss is mild .. I am planning to take the Hyperbaric Oxygen Therapy ..
and will post my outcome .

Also wondering how were you able to reduce tinittus ..? Did you make a full recovery from tinittus ? Pls share any thoughts regarding this ..
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Avatar_m_tn
I have just suffered SSHL, i am not completely deaf but do have a hissing noise in the ear, in quiet environments it is ok to live with but in noisy environments it irritates the ear and the hissing noise, i certainly would not go to a concert at the moment.

Have you experienced the hissing noise and if so has that got better over time?

Gerard
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Avatar_m_tn
I have just suffered SSHL, i am not completely deaf but do have a hissing noise in the ear, in quiet environments it is ok to live with but in noisy environments it irritates the ear and the hissing noise, i certainly would not go to a concert at the moment.

Have you experienced the hissing noise and if so has that got better over time?

Gerard
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1740498_tn?1328966185
Gerard,

Hi and welcome to the Hearing Loss community. It's nice to meet you.

So sorry to hear about your tinnitus. When did you develop hearing loss and tinnitus? Do you know what caused it? Did the doctor try any medications (maybe steroids?), and how did you respond to them?

That helps predict how things will go for you. Everyone is so different that it is hard to compare experiences. There are so many causes of tinnitus and hearing loss.

In the meanwhile, how are you handling the hearing loss?

Take care,

BC
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Avatar_m_tn
Thanks for your message,

I went swimming and had water in my ear so thought that was the cause, went to the doctor and he gave me ear drops, back again after two weeks and gave me nose spray as he thought the tube from my nose to the ear was blocked, two weeks later asked doctor to send me to ENT which he did. They carried out an ear test and diagnosed SSHL, started on steroids, been on them for seven days but the noise in my ear has got worse and when i am in a noisy environment i get a resonating in my deaf ear and the side of my head. I have had a MRI scan and blood test and get the results tomorrow, finding it all hard to deal with.

Have you had SSHL yourself, and have you improved/had any treatment??

Regards,

Gerard
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1740498_tn?1328966185
How crazy! I can imagine that would be overwhelming.

I have mild hearing loss and tinnitus, but mine fluctuates and is on the mend right now. Mine is neurological, however--the hearing nerve or brain stem rather than the middle ear or inner ear. I have multiple sclerosis.

I hope you feel better soon!

BC
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Avatar_f_tn
I too have just been diagnosed with SSHL.  Its two weeks out with no improvement.  Blood work normal MRI normal.  This site give me hope that maybe i can regain some hearing.  Nice to know i am not alone
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Avatar_m_tn
I was just diagnosed 2  weeks ago. I have been taking Prednisone and have had 2 shots in the ear. I am starting to hear some faint noises. I was wondering how others are doing and if the hyperbaric treatment helps.
Thanks
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Avatar_m_tn
Looks like I just joined a group of confused, angry, people.  I too have been diagnosed with SHL.  Now I am confused, angry and hoping that my hearing comes back also.  

Last week I laid down to take a nap and woke up with no hearing in my right ear.  The buzzing is awful.  Non stop.  I did go to urgent care the next morning and received a steroid shot and the next week made it to the ENT.  Still, the news is not favorable.  I think what irritates me the most, is that my husband had to call about 8 ENTs to get me into one in a timely fashion.  By then it would have been a month or longer.  

Why don't the ENTs make it an effort to treat this urgently.  We are all angry and confused when this first happens.

ShirleyH
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152264_tn?1280358257
I am very surprised you had trouble getting into an ENT quickly, if you made very clear to them that it was a SUDDEN hearing loss. ENTs should know that is an otological emergency. At least it used to be so considered; I'm not sure whether that has changed due to the lack of success and knowledge in treating it. (Supposedly 90 percent of cases remain without a known cause.) Still, I'm shocked you had to call that many.

Good luck--hope you get your hearing back. If not, Baha has been a good solution for me.
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Avatar_m_tn
Shirley
I and to go to a second ent to get aggressive treatment. I went to a local urgent care and they miss diagnosed. I went to my Dr. they just gave me antibiotics. 2 days later I did get into a local PA ENT. She diagnosed it correctly but just gave me a low dose of prednisone. I decided to get a second opinion and fortunately I did get into a top ENT. She was great and gave me both shots and a higher dose of prednisone. She also suggested taking zinc. It's been 4wks now and I have recovered a good portion of my hearing. Unfortunately I still have the tinnitus. I was fortunate to aggressively try to get the right treatment. Most folks aren't that fortunate.
Good luck!
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Avatar_m_tn
Thanks for the conformation that my ENT is doing the right thing.  I go this Friday for an MRI.  Some of the hearing has returned, but it seems to come and go.  Still not anywhere near normal.  Each word a person says must be enunciated clearly or I have trouble making it out with my right ear.  Talking fast is also very difficult to understand.  My daughter has already told my grandchildren what is gong on.  My how life changes suddenly.  Now if only this tinnitus would go away.  I think it is the worse.  
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Avatar_m_tn
It was made very clear that it was sudden hearing loss.  My husband was very angry that it was going to take about 2 weeks to a month to get in.  I am so very glad that he was aggressive in finding me a Dr. that seems to be doing the right thing.  Some hearing has returned but the tinnitus is the worse.  I so hope that it will go away.  I could live with the hearing loss better if the 24/7 ringing goes away.
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152264_tn?1280358257
Hi Shirley--I'm glad, too, that your husband was aggressive in getting you in soon. I thought all ENTs, at least, understood how important this is! I'm shocked. (And horrified.) Medicine seems to be getting less and less responsive and conscientious about individual patients' circumstances and needs. Maybe doctors are just getting overburdened to the point they can't do their jobs. I really don't know.

Sorry about the tinnitus. I was bummed when I realized mine was going to be permanent (it pretty much comes with the territory in hearing loss), but to tell the truth, I fairly quickly stopped even noticing it unless I'd think about it. It's amazing how the brain can adapt and tune things out.

Try to focus on your everyday life and not worry about the tinnitus. It will eventually settle down and become less bothersome, especially after you've got the MRI and know that it's not a sign of anything to worry about. What you want is to NOT let the tinnitus intrude on your life. I began thinking of it as just a "normal" part of me, my "friendly neighborhood tinnitus," and in fact on those rare occasions when it seems to stop for a couple of hours, I feel like something's wrong!!

Don't let it get a foothold in making you anxious, irritated, or obsessed with it, because that's when you will really have a problem. If that does happen, there IS treatment, in the form of masking, habituation, maybe anti-anxiety meds, etc. But the vast majority of people live with tinnitus without it becoming a problem in their lives. Just don't let it worm its way into your life as a problem, and you will be better able to ignore it and tune it out.

Best of luck and I hope you get more hearing back and a reduction in the tinnitus!
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Avatar_m_tn
Thanks for your encouraging words.  I will post again after I get the results of the MRI.  Take care, and have a great few days.
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Avatar_m_tn
I am also a musician and I also teach music at university. My SSHL came on over a month ago with tinnitus and dizziness, I had three weeks of oral prednisone that me me very weak, tired and irritable. It seemed to do nothing for my condition. I also had three injections of another steroid with no apparent improvement. I am having acupuncture and taking herbs and vitamins. The severity of the hearing loss and tinnitus seems to be directly related to how tired I am. If I get tired the condition worsens and the only thing that seems to help at all is bed rest. Last week I thought there was some improvement, but on the weekend I played a gig and went for a day trip the next day. I had to spend two days in bed after that. Again there was a tiny bit of improvement but after teaching all day today my hearing is now totally gone on the left side and the tinnitus has started in my right ear as well. I am very worried but am finding some encouragement from the news that some people here have had a slow, long recovery, but a recovery nonetheless. Has anyone noticed that bed rest helps?
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152264_tn?1280358257
What kind of doctor are you seeing? I am NOT an expert by any means, but I would think that with something starting in your other ear, you should have AIED (autoimmune inner ear disease) ruled out. I hope you are seeing a true neuro-otologist or oto-neurologist.

Best of luck.
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Avatar_m_tn
I'm seeing an ENT doctor. I'll ask him about this and request a neurologist. Thanks.
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Avatar_m_tn
For all you of out there diagnosied with SNHL . Thought of posting my story ...
Diagnoised with sudden hearing loss around April ..with no impovemnt in test results ..initially ..but after 6 months or so .. my results were almost close to normal ...
Being thru a lot of frustration with the Docs .. and carried out my own .. treatment plan .After all this i am writing this to let ppl know there is some hope out there ..when you do combination therapy one therapy will not work ..atleast in my case .

   Here is wot i did ... :
   1. Was able to take steriods within 3 days of onset symptoms .
   2. Presidisone + Ear Injections ....==== Did not help or see any imporvement for 1st month
    3. Then i started heavily on the Vitamins (B12) + Magnesium + Gingko + Antioxidant .. for 3-5 months continous .. Gingko showed great results atleast intially
   4. At last out of much frustation i have used Cinnazarine (anti histamine) for tinnitus .. this really helped my tinittus is almost softer now.

All in all my if you dont see a response in 1-2 months dont worry stick to you guts and follow your plan . **Only Combination Therapy Works **
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Avatar_m_tn
Thanks so much for this jhon79. I also had the oral prednisone and 4 injections with no apparent results. After 6 weeks I am now totally deaf in the left ear, dizzy and nauseated with extreme tinnitus. Bed rest seems to help and I have requested sick leave from work for a month. I have acupuncture once a week and am taking herbs and vitamins. I will add the Ginko and magnesium to the list. I'll look into the antihistamine as well.

When there was still a little hearing left it felt like a lifeline but now I am adrift with no land in sight. Thanks so much for your post.
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152264_tn?1280358257
Hi journeyman--what I meant was, you should see someone who SPECIALIZES in ears and hearing (not a "plain" ENT and not a "plain" neurologist).

A neuro-otologist (also spelled neurotologist) is an ENT with extra training in the inner ear and its connections to the brain.

An oto-neurologist is a neurologist with extra training in the inner ear and its connections to the brain.

So they start in different specialties but kind of end up in the same place, except that ENTs do surgery and neurologists don't. They both focus on dizziness and hearing, but one focuses on ear causes, the other focuses on brain causes.

Check out this state-by-state list from the American Neurotology Society:

http://www.americanneurotologysociety.com/images/forms/13_14memberstate.pdf
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Avatar_m_tn
Thanks Nancy T. These seem very scarce in Toronto but I'll keep looking. My condition seems to worsen by the day and I find it difficult to get out of bed. The dizziness has become vertigo and I feel nauseated all the time. The tinnitus is so loud that it wakes me up and I am now totally deaf in the left ear. They tell me it will take up to three months to get an MRI to rule out anything else. To anyone reading this who has been where I am now, any help would be appreciated. With all due respect, I would rather not hear from the nay sayers. I know my odds of a recovery are not good. I am just looking for a lifeline at this point; anything. -Roy
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Avatar_m_tn
PM sent
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152264_tn?1280358257
If you haven't already, I would let your doctor know that your condition is worsening quickly. This is very concerning. If there is a university hospital in your area, try asking them who the best ear specialists are in your area. Your doctor(s) should really be made aware, without waiting for your MRI, if your symptoms are getting significantly worse.
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Avatar_m_tn
My ENT has washed his hands of it and my family doctor can do nothing. I did track down a neuro-otologist and will get a referral; God knows how long that will take. I saw a homeopath and was given something for the vertigo and nausea which is helping a little. She also treated the hearing loss but time will tell if that works. I have been totally deaf in the left ear for over a week now. I have read of people who have come back from this point and recovered so I am not giving up total hope yet. It seems like most of us are on our own as far as the medical establishment is concerned. -Roy
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152264_tn?1280358257
If your hearing is deteriorating, that should be considered an OTOLOGICAL EMERGENCY and someone should see you promptly. If I were you, I would get insistent, and I would get angry if needed, until you get in to a neuro-otologist.

I would not be wasting time with homeopathy for an urgent condition like yours. This is not going to save your hearing. Do yourself a favor and even go to the emergency room if necessary, to get seen by a hearing specialist. At the very least, seek an urgent re-test of your hearing. If it has gone downhill, they need to be doing something NOW, not weeks from now. Good luck!
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152264_tn?1280358257
Believe me, Roy, you don't want to risk your hearing loss becoming permanent. I agree that it seems the medical establishment can appear detached and unconcerned, but if your hearing loss becomes permanent, it is YOU, not THEM, who will have to live with it the rest of your life, and that is not easy or fun. Especially if you are having symptoms in both ears, I would be getting myself to the emergency room if you can't get seen promptly any other way! Please be INSISTENT and emphasize that you need to be seen now and have your hearing evaluated by a true neuro-otologist. Most other doctors don't know anything about ears and sudden or suddenly progressive hearing loss. It is YOUR hearing. I learned that lesson a month too late!! (I am permanently deaf in one ear, and likely would have remained so even if I'd been seen promptly by a specialist, but I still wish I had known better than to let two PCPs blow me off with "wax" and "Eustachian tube dysfunction" for weeks.)
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152264_tn?1280358257
May I make a suggestion. Call these folks--

http://pmh.toronto.on.ca/Clinics_&_Services/clinics/neuro_otology_tgh.asp

and tell them your hearing is continuing to deteriorate, and is there any way they can call your ENT and have him or her send a referral for an urgent appointment? If your ENT is unconcerned by the progression and is throwing up his/her hands after trying nothing but steroids, you need better care.

I'll get off my soapbox now. :)
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1740498_tn?1328966185
Yeah, Nancy! I second (and third and fourth) her suggestions. You have a major medical emergency.

Nancy makes a great point that although we do not want to seem "difficult", we are the ones who have to live with the problems. Unfortunately, we may have to get way outside our comfort zones sometimes in order to get appropriate care. Not even great care but appropriate care.

I remember shocking myself by telling a neurologist "I'm speaking!" when she kept interrupting me. She was a "it's all in your head" doc. I got my butt transferred to a neurologist who specialized in my condition--the nice thing about transferring is that you may not even need to speak to your doctor, because the secretaries do most/all of the work.

You can do this. Make someone hear you.

BC

p.s. Hi Nancy! I hope you are doing well. I continue to deteriorate, unfortunately. Trying to figure out how to retire on disability and still eat.
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Avatar_m_tn
Thanks for this contact Nancy T. I will get a referral. I don't know how significant this is, but today I discovered ear wax for the first time since this condition started. Also, when I rub my ear, I can hear a faint beeping sound. For the last week there was absolutely no sound at all. My energy is starting to come back and although still dizzy, the nausea is not quite so bad. This could be from the homeopathic medication. I'm posting a lot of info here, but it might be of some help to others going through this. I know that for me, anything positive was helpful.
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152264_tn?1280358257
Hey Roy--please read Beachcomber's post and note that "major medical emergency" part. She is a professional and KNOWS WHAT SHE'S TALKING ABOUT. You must take matters into your own hands, since your PCP and ENT have failed you.

(Hi, BC! Very sorry to hear you are continuing to deteriorate; that ***** bigtime. I hope you get to retire AND eat. I'm pretty much the same, just older and tireder, plus having "fun" playing with new meds for the dizziness and brain fog. :)
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152264_tn?1280358257
Hi Roy, looks like our posts crossed. Hope you get that referral immediately; good luck. The beeping sound could possibly be a form of tinnitus--my hearing-loss ear sometimes has had times where I hear a faraway "alarm clock" beeping for hours at a time, then it stops. It's just your brain "imagining" that it hears sound because it's not getting proper signals from your ear. I'm glad you are feeling a bit better, but don't let that stop you from getting your hearing urgently evaluated and treated. The beeping does NOT mean your hearing is returning, and your problem is clearly much more serious than earwax. If it were just earwax, the ENT would have taken care of that earlier. Good luck and please let us know what happens.
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Oh I have lots of tinnitus. This was just a response from rubbing the ear; a response to stimulus which is a little different. I am determined to see a neuro-otologist as you suggested, but it seems like I have to jump through hoops. (referral) I have no idea what they could do but will see one anyway. In the meantime I feel that I have to find my own modality of treatment as well. Will post again in a few days with an update.
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Hi, Brenda,

I came across your blog after researching SSHL, as I recently had the same experience. I woke up about 4 weeks ago completely deaf in the left ear. I was not sick, and I am 32 years old, and very healthy. It was awful, lots of vertigo and tinnitus as well. I immediately went to the ER, where is was misdiagnosed as a double ear infection in the one ear, and I was given antibitoics. After 3 days, I was not making any improvement and still could not hear at all. I went to an ENT to follow up, and he have me a hearing test and diagnosed the issue. My case, as many is considered idiopathic, however the drs I have been working with over the past month believe it was most likely caused by a viral infection that damaged the nerve in the inner ear. I started oral presidone as soon as I was diagnosed, within the first week, which only slightly helped. I was then able to start hearing vibrations and sounds, however no word clarity. I took another hearing test 2 days ago, and have improved a bit since then, now my loss is considered to be severe/moderate, instead of profound deaf, as it was in the beginning stages. My ENT referred me to an ear specialist for a second opinion, as it's been a month, and he feels it is time to explore other options. I went last night, and received the steroid injection, plus a 10 day supply of stronger oral steroids. I go back next week to follow up. The ear specialist told me theres an 80% chance that at this point, with the severity of the loss and time frame, that I will not fully recover; however, I am optimistic, and believe that God and time will help me through this horrible ordeal. I do not believe that there is a certain time frame for guaranteed recovery, as each case is unique. Thoughts and prayers to you all that have suffered through this experience...never give up hope!

Hoping For Full Recovery
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Yes, don't give up hope. It has been 7 weeks for me and I have heard of people recovering after as long as 6 months. It seems like it is up to us to find our own treatment modalities. What works for one might not work for everyone. Good luck to you and to all of us struggling with this condition. -Roy
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Hi everyone, I too was diagnosed with sshl 8 weeks ago. I got 3 steroid injections and took prednisone for 14 days. I didn't notice any improvement in the first 3 weeks. It wasn't until about 5 weeks that I started to really notice something happening. I'm currently moderately-severely deaf in the right ear. My word recognition was only at 44% but I feel that it's improved. The annoying thing is that any improvement is so suttle that I wonde if there was any at all. I measure with the phone dial tone. I believe that I'll improve even more but am fearful that it won't return to normal. My ENT says if speech recognition goes up I can be fitted for a hearing aid.
It's nice to hear everyone else's experience and for those who have recovered, congrats and you give the rest of us hope! :)
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Please keep the faith!  I had the same treatment both shoots and the oral steroids. The ENT specialist kept my expectations low. She gave me a40%chance of getting 50% back. I would guess I am around 80% back and improving . I go next week for a follow up  and audiology exam. She also suggested taking Zinc. That might have helped also.
Good Luck!
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Skiday,
   How long have you had the condition? It has been two months for me and I'm still deaf. Some days I think there is the beginning of a recovery and then one day it seems like I go backwards. What was your timeline? -Roy
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Thanks Skiday! That's very encouraging! I went for an audio test 2 days ago and now have a moderate loss (with the average at 55db). Today makes 9 weeks since I suffered sshl - profound. I've recovered 50% so far.

Roy, hang in there. I didn't see any recovery until after 5 weeks. It may be happening for you now. It's hard to tell if you're gaining any hearing but if you check with the phone dial tone you can tell if there's improvement. That's how I started to notice something.
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It will be 9wks tomorrow. I started to have some recovery around th 4th week.
it was pretty gradual but I did see some improvement each day. The recovery
seems to have slowed now but I'm further that I expected.
It's the most bizarre condition.
Good Luck!
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Thanks for the update. Mine is up and down. I thought I was starting to recover but I played a gig last night and the tinnitus level went up and today I have lost the tiny bit of hearing recovery I thought I had. I used ear plugs but was still affected. I have a concert tomorrow and will obviously have to stop playing after that, at least for quite a while.

I was wondering if anyone has tried taking low doses of Prednisone (5 or 10mg a day) after a couple of months. The high doses really messed me up. If there is still inflammation I'm wondering if a low dose over a week or two might help without so many side effects. Anyone try this? -Roy
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A friend of mine told me about a drug called Cerc. Has anyone tried it?
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I am hoping to join this great conversation! How comforting to find a group of people with such a range of experiences with SSHL.
I am 25 and in absolutely perfect health as far as I know.
I experienced sudden hearing loss in my right ear on November 3rd (almost 3 weeks ago) while on an airplane. It was almost instantly accompanied by dizziness and tinnitus.
I went to emerg almost as soon as I got off the plane and luckily I was correctly diagnosed and given a high dose of prednisone. So my first dose of prednisone was given in less than 12 hours from the onset of the hearing loss.
After two weeks on Prednisone, the hearing loss is still profound, so on monday I started the intratympanic steroid injections. The plan is to do three injections a week for 2-3 weeks, depending on how things go. Man, do those injections ever hurt, I've been finding them totally traumatic but it's worth it if there is even a small chance that they will help.
The dizziness has improved hugely, but so far my hearing is almost completely absent and I still have constant tinnitus. My hearing test showed that the only thing I can even slightly hear is a very very high pitch, and even at that pitch I have zero word recognition, just a very uncomfortable buzz. Another commenter mentioned that it feels more like a shock than a sound, that's how I would describe it too with those high pitches.
The first ENT I was treated by made a lot of offhand discouraging comments such as "every day that passes that you don't get your hearing back, it gets less and less likely that it will ever come back."
He was extremely negative and uncaring and I was glad to switch to a different ENT at Mount Sinhai (Toronto) who is much more interested in my case and explains everything to me compassionately. He still doesn't think I have a great chance of getting my hearing back though, because it's profound and because it hasn't improved after a couple of weeks.
This board gives me a LOT of hope though, that there actually can be improvements after the 2-3 week point.
I'm really curious about the hyperbaric oxygen therapy. I mentioned it to my ENT and apparently it's not really something that is done for SSHL here in Toronto, but he was totally open to sending me to talk to another ENT at a hospital that has the hyperbaric oxygen chambers. I might look into that some more.
I'm also curious - those who posted about taking vitamins and supplements (B12, Ginkgo, Antioxidant, Fish Oil, Zinc) what were the amounts you took?

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Hi Emma0916. It has been 9 weeks for me and I have no hearing in the affected ear, Still dizzy and have extreme tinnitus. This week I will see a herbalist who cured another musician. His case was less severe than mine but I am still hopeful and will post the results here. I have been trying different therapies and can't say if anyone has helped. I say Robert Harris, a cranial massage therapist yesterday but can't say if it helped. Acupuncture, Chinese herbs, vitamins, Ginko ....anything that might help I am trying. I am taking the amounts suggested on the bottles.

One thing I have found out is that it is likely that the fluid builds up in the inner ear causing dizziness. Doctors usually prescribe diuretics to eliminate water from the body. These can be bad for the rest of the body. Green tea is a mild diuretic which I have been avoiding because I heard caffeine makes the tinnitus worse. I will start drinking it again in moderation to see if it helps. Also, tumeric has anti-inflammatory properties similar to steroids. A friend with cancer takes three teaspoons of it a day. It tastes bad but you can mix it with something else. I'll post after I start the regimen with the herbalist. By the way, the herbalist insists that nerves can regenerate with the right treatment, contrary to conventional doctors' opinions. -Roy
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Hi Roy,

That's so weird, I actually have an appointment with Robert Harris on Friday! I've been debating whether or not to cancel it, I'm having a hard time believing it'll help. What did you think overall?
It sounds like we're going through a very similar thing. I too have tried acupuncture, vitamins... Even my chiropractor took a crack at it. Sorry, bad pun.
I have had three steroid injections now, and I am totally surprised but I think it may actually be working. It's so hard to tell, but as of yesterday I can sort of hear my own voice, and I can hear much lower and quieter pitches than before. It's still very buzzy, no difference between a beep, and dog barking, a voice, etc. But I really think something is improving. I'm trying not to get my hopes up too much though. It's been three weeks today since my hearing loss.
Roy, I was trying to figure out from your past messages- did you consider the steroid injections? I know you said that the prednisone messed you up. But with the injections there are no side effects because it really just stays in your ear.
One last thing- have you noticed that the position you sleep in can affect the dizziness the following day? I find if I sleep on my bad ear, I have less dizziness when I get up in the morning. If I sleep on my good ear, I'm much tipsier the next day. I haven't tried sleeping on my back.
Hope you're coping ok Roy. I can't imagine still feeling like this in six weeks, although I may have to.
Emma
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Hi Emma,
   I'll send you a PM. -Roy
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Interesting article here: http://www.drlatorre.eu/
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I met with the herbalist today and he took about 1 1/2 hours to ask questions and put together a profile. He will now put together a treatment regimen for me after consulting his mentors. This should take a week or so. He did say that there is a treatment that has been used for over a century in Europe with success and that will certainly be part of my own regimen. I'll post again after I begin. BTW, I sent you a PM emma0916 regarding the cranial massage and a couple of other things. Since having that session on Friday with Robert Harris I have had more of a sensation of fullness in my head, but an increase in the response in the affected ear.  -Roy
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Woke up Oct 21, 2013, and took 4 steps, and my left ear filled.  Got in to see my PCP same day.  She diagnosed Eustacian tube issue and put me on Flonase.  Ten days later, no improvement, she referred me to an ENT.  Had 45 minutes of hearing tests, and got the SSHL diagnosis.  In my case, thought to be either viral or autoimmune based.

I've had 3 intratympanic decadron infusions, once a week for 3 consecutive weeks.  Now waiting one week and redo the hearing tests.  No changes that I have noticed.  I have the constant hissing sound.  No dizziness, no vertigo.

I've been researching online almost daily yet only today did I find this forum!  

I have already added magnesium, took notes as I read this thread and will add gingko, Vit B12, fish oil and antioxidant.

VERY frustrated with this whole thing.  The constant noise is making me nuts!  And music sounds totally off key.

One thing no one has mentioned:  I was advised to use an ear plug for my right ear, as now I have no 'spare.'  Ear plug rating of at least 29, I ordered Hearos rated at 32 from Amazon.  I was told to use it for any loud noise: my hair dryer, mowing the lawn (which I do), snow blower, etc.  
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I could not find an 'edit' button.  I listed what I will add as supplements based on reading this thread; I will also add zinc, someone also mentioned that.

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So sorry to hear your story! So if I understand right, it has been about a month? I hope you see an improvement in your hearing. Good advice about protecting your good ear from noise-induced hearing loss.

BC
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Thanks.  I guess 6 weeks tomorrow.  UGH.  I am hating this!

Driving on the highway is also odd, can't hear the cars coming up on my left.  I am learning to use the side mirrors a lot more.
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You will definitely find yourself using visual cues more, like those side mirrors. Sorry, this is so frustrating! I hope you get your hearing back. Are you looking into a hearing aid or BAHA, for if it doesn't come back in a few months?
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It has now been almost exactly four weeks since my hearing loss.

I ended up canceling my appointment with Robert Harris. I'm still getting three intratympanic injections a week and it just felt like too many medical appointments. I was overwhelmed. I'm thinking I may try to rebook it though, especially if you're saying it may have helped you a bit. How is your ear now?

Yesterday I had a hearing test to see if there were any changes after two weeks of injections (so 6 shots total). Actually, there was a significant improvement! My hearing loss has changed from profound to severe! That was pretty exciting to hear. Also, on my first test I just sat in silence for my whole word recognition test because I could literally discern nothing but a faint buzzing that sounded absolutely nothing like words. This time, I still got zero as my word recognition score, BUT I was able to discern enough to make a guess for every word, and the audiologist said my guesses were all phonetically close. So, things have definitely improved. The question is whether they will continue to improve. My ENT and I decided to keep going with the injections. We don't know if they are responsible for the positive changes or if I'm just healing on my own, but he said it wouldn't hurt to keep going. So we're doing another two weeks, three per week. I never thought I'd say this but I'm totally used to the injections now. For anyone who has just had their first injection - it does get easier!! Thank goodness. One really can get used to anything, even inner ear injections.
My hope right now is that my hearing, and especially my word recognition, will continue to improve, at least to the point that I will be a candidate for a hearing aid of some kind. Right now my word recognition isn't good enough. I have another hearing test in a week to see whether or not things are still improving. Will post an update then.
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For now, my ENT does not even want to discuss a hearing aid.  He is working on things which won't cost me much out of pocket first.  Plus, I thought he said that hearing aids don't work well with monaural hearing?  Or did I read that someplace online, maybe that's it.  

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OMGosh, THREE per week?!  I had one per week for 3 weeks, and that is what I saw online as the standard.  Initial hearing tests show my hearing loss in the one ear is severe.  Perhaps because you had such a 'profound' loss?  Hmm.  So there is not even consensus on this?  I didn't know that.

I'm glad you are seeing improvement.
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That's good news Emma0916; keep up the fight. I'll start the herbalist's regimen tomorrow and hope for the best. I saw an audiologist last week to get some ear plugs to protect what hearing I have in the good ear and to give the affected ear all the chances I can. He dismissed any idea of recovering my hearing and went right to the sales pitch for hearing aids. Well, worst case scenario I guess, but here is what he said. One hearing aid goes into the deaf ear and picks up sound. Then it transmits it wirelessly to another hearing aid in the good ear providing the illusion of hearing on both sides. This is supposed to restore the depth perception, sense of direction etc. and help balance. He said that as a musician I will be able to play again. I told him I wasn't ready to throw in the towel just yet as I knew of people who regained their hearing after as long as a year. Well, if I regain my energy, balance and get the tinnitus toned down and am still deaf after several months with no indication of any recovery I might go for the hearing aids. Does anyone else use these? If so, how effective are they? -Roy
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Freedom2B - Wow, 1 per week would definitely be nicer!! My ENT has been pretty insistent on 3 per week, even making arrangements for me to see a colleague of his for my injection when he is out of the office. It really seems like there is no standard treatment for SSHL... To be honest, I am still confused about what is physiologically wrong with my ear. Today I heard a story about someone who had SSHL, no hearing recovered for 20 years, then went on an airplane and spontaneously recovered his hearing, completely. I also read an article in a medical journal about a woman who had SSHL which started on an airplane (like mine) and did not recover at all until three months later, when her hearing spontaneously returned while riding a high speed rollercoaster. I mean - what the heck!! I can't wrap my head around this stuff.
Roy - My audiologist mentioned the same type of hearing aid to me... My first thought was that it sounded like kind of a drag, having hearing aids in both ears... I don't know, I'm finding that I'm adjusting really easily to only hearing in one ear, so maybe I just won't bother with it (assuming my hearing doesn't come back). I guess it's quite different for you as a musician though. Let us know what you think of the herbalist stuff!

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I hear you. (pun intended) I don't like the idea of hearing aids either. That will be the last resort for me and not for a good while yet. It seems to me like all these terms, SSHL, labrinthitis, meniers, etc. are all just descriptive terms for a set of symptoms. If you fall off a roof, get shot or are involved in a car accident there is probably no better place to be in the world. But.....when it comes to autoimmune or chronic conditions there is a lot that is lacking. My personal feeling is that general health care in North America has been influenced too much by the pharmaceutical industry. Since the late 1960s for example, very little remains in doctor training in the area of the mind/body relationship. This was not always the case. Now doctors in general look for a cause of something and prescribe drugs or surgery. If they can't find a cause through blood tests, X-rays, etc.they are at as loss. In the case of SSHL there is the assumption that the auditory nerve has been traumatized by a virus, a loud noise or physical trauma. Based on an assumption they go on to assume that the nerve is inflamed and prescribe corticosteroids. For those having any kind of recovery I say GREAT and keep working at it; whatever works for each of us is good. I don't know this, but it could be the case that vestibular afflictions are on the rise. We might be hearing about this in the mainstream media soon. That's my prediction for 2014. -Roy
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Interesting what you said, Roy.  For me, this hearing loss struck 48 hours after one of my dogs escaped from the fenced in back yard and was hit and killed by a car.  I did not see this happen (thank goodness) but found it quite traumatic and was hysterical for almost 10 minutes.  I have wondered whether this was somehow trauma related - stress to the entire body.  My ENT is leaning more towards immune system attack, in my case, for the following reasons:
- my Dad age 87 now has extensive autoimmune issues (he is in a nursing home, I could no longer manage at home with all he issues)
- 15% of the population in the US has this autoimmune disorder
- it is hereditary
- I already have 2 autoimmune issues

My Dad does NOT have hearing issues as part of his many things going on with his body.  Interesting, his first issue developed when he was age 14 and his older sister died of tuberculosis.  So it was a high stress event which triggered his system issues.

I found this link at Mass. Eye and Ear to be the most helpful explanation I could find online.  http://www.masseyeandear.org/for-patients/patient-guide/patient-education/diseases-and-conditions/sudden-deafness/

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For single-sided deafness, the Baha (bone-anchored hearing aid) can be an excellent solution. I've had one for 5 years and am very happy with it.

The Baha eliminates the need for a CROS hearing aid--the kind where you wear a hearing aid in each one, one to transmit and one to receive.

The Baha involves a minor surgery (which may or may not be done under a general anesthetic--doctors differ) to implant a titanium screw in your skullbone behind the deaf ear. Over three months, the titanium osseointegrates--combines with your skullbone--so that it's firmly implanted. Then you snap on the processor (hearing aid) like a Lego. The processor picks up sound from your deaf side and vibrates the implant, causing the sound vibrations to travel through your skullbone to the opposite good ear. (This assumes your opposite inner ear is undamaged, or relatively so.)

It's marvelous because voices sound so clear through the Baha--kind of like coming through a radio, but perfectly understandable. I use it at work and at social gatherings and it really helps.

Downsides are you have to protect it from rain and dampness. Mine gives a little feedback in some situations, but I understand there are newer models that are more advanced, and now I think there are at least two manufacturers instead of one.

An audiologist can advise you on the best hearing solution. More and more insurances are paying for Baha, I believe. Mine didn't for a long time, so I switched insurances and got it covered--but now I think my original insurance does pay for it. Or at least part of it.

Good luck to everyone!

Nancy
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More info - yesterday I was speaking with a Nurse Practitioner -- she said she's been in practice 21 years and never heard of this sshl -- until 2 weeks ago, and I am the THIRD person who has it.

So I asked, and she said yes, each of the other 2 people also suffered a major stress event within 48 hours of onset - one a medical crisis, one a psychological one.

Will be interesting to learn if this is on the rise.

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That is so interesting. For me, I think it was at least partially triggered by issues with pressure changes, but I was also very stressed out at the time - I have a pretty bad fear of flying and I get severe anxiety while in the air. I wonder if that stress contributed as well...  
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The information in that link is a good summary of the conventional thinking on the condition. The problem is that the conventional thinking is based on a great deal of assumption. There needs to be some research done on SSHL to get a clearer picture of what is at work to cause it. Opinions differ on treatment depending on which clinical survey results you read.

Thanks for the info on the hearing aids NancyT. Did you balance improve after getting the Baha?

With regard to stress, the Italian doctor that I linked to in an earlier post did discover through his own research that stress causes an increase in ADH in the body which forms a barrier against the natural production or diuretics that our bodies use to regulate fluid levels. He treats the hydrops which cause the tinnitus and dizziness by reducing the amount of ADH produced. He has good results. As for nerve damage, there is a split between the conventional medical community and the naturopathic community. I am now being treated for nerve damage so we'll see in a few months how that goes. -Roy
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I wonder if jhon79 or someone could be more specific, as jhon listed the things he added (zinc, ginko, etc) and one he listed is: antioxidant.  I know blueberries contain lots of antioxidant.  When I was buying the other items, I had no idea what to get.  

Thanks to any and all replies!
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Hi Roy--no, the Baha does not do anything for balance or dizziness. (I have some dizziness but no significant balance problems.) It doesn't affect the ear itself at all; it merely transfers sound from one side to the other. More info here, at the manufacturers' sites:

http://www.cochlear.com/wps/wcm/connect/us/home/treatment-options-for-hearing-loss/bone-conduction-implants/bone-conduction-system

http://www.oticonmedical.com/Medical/YourTreatment/About%20bone%20conduction/How%20does%20it%20work.aspx
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Saw the ENT today, and retook all the hearing tests. IMPROVEMENT!! For the low tones, my left ear is now back to normal!! For the high tones, used to be at 60, now at 40, so also an improvement. Going to wait 3 months and then return and take the hearing tests again.

NO MORE INFUSIONS thank goodness; I really did NOT like those.

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Hi everyone, reading your stories makes me not to feel so alone. I am a healthy 53 y/o and suffered my first hearing comprehension loss in my left year maybe 20 years ago. Specialist said ot was a virus, go home. 15 years ago my right one became full and went to emergency room, sinus was the diagnosis and a hearing loss the outcome together with a hearing aid. Three years ago while I was in Africa, boom!! here we go again, flew back home and went to specialist and what did he prescribe? drops. a few weeks later and already in desperation mode I finally found the answer on line...sudden hearing loss, no sinus, no virus... I found an specialist and treated me with steroids but it was way too late. this past weekend it happened again, thied time in my right ear so I called my now permanent cochlear transplant specialist an university of miami hospital and he prescribed me the steroids over the pjone and three days after I visited his office. Today the sad news, another hearing loss and it is not looking good at all . I had my first injection this afternoon and cried my heart out. I am supposed to leave the country in a week and Imdon't know I will be able to,I will get another injection on Monday. it is frustrating to be missdiagnosed, all of us!!! this condition is life changing like any other and the community is not taken seriously. I have forced emergency care doctors to go on line while I wait to read what I am talking  about and I have brought with me the name and dosage of the meds they are supposed to prescribe while in the meantime they want to stick an iv in my arm just in case.... so sad
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p.s. in my left I have profound loss of comprehension reason for which I cannot wear a hearing aid, and in my right one three sudden hearing losses. hoping that this one does not leave me completely deaf. wearing an aid on right one.
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  HI everyone- I just found this website- I've just recently had this SSHL-episode began 12/1/13- woke up fine, just felt as though I had water in my ear.  I had not been sick at all., no stress and by 3pm was out for the count with complete hearing loss Left ear, hours of vomiting and ataxia and off balance. Went to ER and had MRI/MRA neg- but they never had an ENT consult- I am a health care professional and did my own detective work when I was able to sit up  2days later and ENT had me come in  immediatly. Put on steroids, anti-viral, antivert. Have had 1 steroid injection in left ear, and labs pending to R/O auto immune.  I am still off balance and can't walk straight and get very dizzy if I do too much.  Two hearing tests so far show total deafness left ear.  Go back to ENT tomorrow.  My question is how long do they wait before they do the Bone Anchored Hearing System?  And does it primarily help with the hearing loss or the balance.  I am normally a very active person and want to get back to "normal" ASAP.  Any help would be greatly appreciated- I live on Long Island, and have found a doctor in Manhattan that does this procedure
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Freedom2B - That is such great news!! Very encouraging.

I'm at six weeks now. All the steroid injections caused a perforation in my ear drum, which actually made the hearing loss slightly worse, at least temporarily, until the perforation heals. I think it's healing already. So as of last week I am doing no more injections... which means I am no longer seeing a doctor regularly. My next appointment with my ENT is in three months. A very strange feeling after being so closely monitored (3x/week) for awhile. I guess now is the time to try out some alternative things... supplements, etc.
A note to everyone - I have been finding that chiropractic adjustments are extremely helpful to me, simply because I am constantly turning my head and craning my neck to position my good ear so that I can hear things. This has been causing me a lot of neck and shoulder pain. I'm sure all of you can relate. Just a suggestion to see a chiropractor or massage therapist to offer support in that area. It's helping me a lot.
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Hello,

My name is Fahed and i Live in Pakistan. I was diagnosed on 25th Nov 2013 with SSHL in right ear within 12 hours and IV steroids were injected but no improvement. After 2 weeks of standard steroid therapy there was no improvement so a tube was inserted in my ear through which steroids  were directly injected in the ear. Now its been 5 weeks and i am still on medication.  I can feel very little improvement in the sense that some sounds which i could not hear earlier can be heard in a distorted manner but no word recoginition at all.  The noise (tinitus) in the ear is still the same.

Just wanted to know if you recovered completely and in what time frame? You can understand what i am going through.

Fahed
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Just came to know about this community and feel that I should post something which can help other fellow sufrers.  I am really surprised to know that a lot of people on this website have been misdiagnosed or have received late treatment despite the fact that they live in the developed world (USA / Canada). I had my SSHL about 5 weeks ago in the middle of the night while sleeping. In the morning all hearing was lost and there was extreme tinitus and pressure (feeling of ear being blocked) in the right ear. I went to an ENT in the morining who put me on intra-veinous Steroid (Dexamethasone) shots three times a day for 3 days. The doc also gave me an antiviral Course for 7 days (Famvir) and an antibiotic course as well. The hearing test showed seveare to profound hearing loss.  I consulted 2 more ENT specialist within the first week and all agreed on the same diagnosis of sudden hearing loss. Regarding recovery chances no one could give me a clear answer and asked to pray for the best.

On the 11th day I came to know from a friend that he also went through this trauma last year but his hearing suddenly returned on the 14th day and improved rapidly to normal within a couple of days. The tinitus was gone and he was back to his normal condition within 3 weeks. He told me about this ENT specialist who had treated him so I went to that doctor and he admitted me in the hospital under his supervision. I was given all the text book treatment which included regular steroid shots, vitamin B12, Ginko, Serc, Notropil, Zinc, etc.  for 3 days along with complete bed rest in the hospital. When there was no improvement after 3 days the ENT told me that the next step is steroid injections in the Tympanic membrane but instead of going through the agony of repeated injections there is a small surgical procedure under general anesthesia in which a small 2 mm silicone tube will be inserted through the Tympanic membrane (ear drum) which will stay there and the steroids will be poured regularly 3 times a day through this tube. This procedure is called Myringotomy.  I was discharged from the hospital after that and now my wife is putting the steroids through that tube directly in the ear along with oral medication.

Today I am in the middle of the 5th week with slight improvement in hearing but no word recognition at all. Now i can hear some distored sounds which i could not before. My next hearing test is after 10 days and then i will meet my doctor again who is still hopeful that i can regain about 70-80% hearing within the next 6 months.  I have resumed work.  I'm a banker and work in low noise environment but still my tinitus has increased.

I would like to advise all fellow patients to discuss this option of Myringotomy to avoid the hassle of getting shots in the ear.  This procedure is very safe and steroids can be injected at home without the needle prick everytime.

I would appreciate if anyone can share his/her experience/knowledge about corrective surgery options like BAHA, cochlear implant, etc. I'm willing to go to USA or Europe for that if God forbids there is no recovery in 6 months.        

    
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I am so grateful to find these posts.  I  lost all of my hearing on 12/2. I have had 2 steroid shots in the ear, and done oral prednisolone as well. I have a fabulous ENT now, but was misdiagnosed on day 3 by a nurse practioner.  I am still so angry at the nurse who thought it was allergy rhinitis, and cost me valuable time by giving my Flonase and calling my problem nasal drip.  It is so important to get the steroids started early.  

I hear little popping noises sometimes in my left ear, but other than that, my loss is profound.  I get the 3rd shot tomorrow, and my doctor is encouraging me to wait a few weeks before we do an MRI.  I worry all the time that it is a tumor.  While my husband and kids are supportive, my friends often tell me to quit talking about my ear, and that people are okay with only one ear.  I now avoid those people. They have no clue.

I hope some hearing comes back.  I had no idea how much I relied on having both ears.  The things we take  for granted.  I believe this is life changing.

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So sorry you suffered this loss and were misdiagnosed to boot. Same happened to me (I guess I posted at length about it above). I didn't get shots in the ear, just oral prednisone, and not til a month after the loss. I believe the treatments are all somewhat speculative and shots in the dark anyway.

Losing hearing in one ear CAN be devastating--I think it depends quite a bit on what you do in life AND whether you can wear a Baha. I didn't feel too bad about my loss at first, as I worked at home as a freelancer and did almost all communications by e-mail. Now, working in a public library, I'm very glad to have the Baha, which I got 9 years later, and which helps a lot when working with the public. What kind of work do you do? (If you don't mind my asking.)

I didn't consider my loss life-changing, but I did have to make some adaptations until I got my Baha (choice of seating, constantly having to switch sides with people when out walking, missing some things said in social situations, etc.), and it certainly COULD be life-changing for some people.

I'm sure it's hard to wait weeks to see whether the shots help, then for the MRI, and then, if your hearing doesn't return, consultation with an audiologist to see about solutions, such as Baha.

I had dizziness and that was far worse than the unilateral hearing loss. For me, anyway.

I know it's hard to have this sudden, devastating, confusing thing happen to you--it consumes you, at least for a period of time, and you DO want to talk about it a lot. And people DO get tired of hearing about it. That is a really hard pill to swallow--believe me, I know. I remember in the first year or two after the hearing loss, increased dizziness, and bunches of other strange unexplained symptoms, I was doing a lot of research and was expecting my family, etc. to be concerned and ask about it, etc. Well, they did at first, but that gets old for friends and family REALLY fast, and it's hard to remember details about other people's health problems. So don't be surprised if people don't want to hear much about it. I felt awful at first--at every family get-together, I thought, THIS time they are going to ask me about all that! but then they wouldn't, and I'd feel hurt. I got over that feeling of hurt, though. People probably really are concerned, at least initially, but it's not such a topic of fascination and concern for them as it is for you.

But the good news is, WE are here, WE understand, and you can talk and ask questions and vent all you want. The hearing-loss forum here doesn't get much activity, but I used to read the "hearing issues" forum on the Acoustic Neuroma Association web site (anausa.org) even though I didn't have an acoustic neuroma. But it's all the same being deaf on one side from an AN or from idiopathic SHL. I was also going to suggest a Baha site I frequented, but it seems it's changed a lot since I last logged in. Still, if you look around you can probably find some active SHL and especially Baha forums where people will understand your worries and frustrations and fears.

I am also from Portland, BTW.

Good luck and I hope you get some hearing back, although I guess at this late date and with a profound loss you cannot count on it.

Also, please don't do like I did and drive yourself crazy worrying about an AN (I worried for a week, between the time I finally realized that an AN is very serious and the time I got the MRI results). As you probably know, it's only a tiny percentage of SHL cases that are caused by AN. Something like 2 or 3 percent, if I remember correctly. Well, it's easy for me to say "don't drive yourself crazy" NOW, 15 years later, but actually you can't help it. The unknown just eats at you. Believe me, I know!

Take care,

Nancy
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Avatar_m_tn
i exactly know what you are going through at the moment. Mine SHL happended on 25th nov and now its the 6th month.  I have consulted 5 ENTs and 4 out of them say natural recovery mostly occurs in the first 3 weeks.

Dont worry about the delay in diagnosis the recovery is simply a matter of luck. I got my first steroid shot within 12 hours and since then i have had about 30 intra-veinous  steroid shots for the first 15 days. In the absense of any improvement got a surgical procedure called myringotomy in which a tube has been inserted in my ear through the tympanic membrane (ear drum) and steroids are being injected for the last 20 days directly in the ear through that tube. I am having loads of other medicines as well including oral steroids and herbal products and vitamins and what not. Even with such timely and aggressive treatment my hearing did not come back in the critical period of first 3 weeks. I strongly agree with Nancy that all treatment  is speculative and even ENTs say that there is no scientific evidence about the success of these treatments.

This truly is a life changing experience but dont loose hope. My first 3 hearing tests showed severe to profound deafness in the left ear but after 5 weeks i can hear some sounds which i could not hear earlier. Although the sounds are distorted with no word recognition but still there is some hope. my next hearing test is on 8th of jan after which i would now more better about the recovery.  Although chance is low after a month but please dont loose hope since some ENTs beleive recovery can happen in 6 months as well.

My major issue is the tinitus (loud noise in the ear) from day 1 without any change. This is driving me crazy. Do you have that as well and how are you dealing with it?

Fahed  
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Normally on a forum, I say something along the lines of 'welcome to the group,' but in this case, well, here you will find folks who UNDERSTAND.  My SSHL occurred Oct 21, 2013, and I still have constant hissing in my left ear.  It is a constant distraction.  My hearing loss is 'severe.'

I saw my PCP the same day, she diagnosed Eustachian tube blockage, and prescribed Flonase.  I did not see an ENT until 3 weeks after onset.  I have since seen my PCP again (annual physical) and I took in a print out about SSHL and how to test for it, how important it is to get the person to an ENT immediately.  She was open to this and planned to bring it up at the new practice meeting!  (My PCP's practice has 8 doctors, and is part of a  larger network with 7 locations and over 50 doctors).

After 3 intratympanic injections (one a week for 3 weeks), my hearing did return somewhat.  Low tones are now back to normal.  High frequency tones came up for 60 to 40.  I am now on hold for 6 months and then will retake the hearing test.

As you can see from reading through this thread, treatment is varied, and no ONE thing is a guaranteed fix.  VERY Frustrating!

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Avatar_m_tn
please let me know if you have fully recovered now or not. In my case 2 months have passed and i have only recovered 10% of pure tone. No word discrimination.  Please please tell me there is still chance of full recovery

Regards
Fahed
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Avatar_m_tn
Hi jhon79-

I was diagnosed with SSHL a few weeks ago and have had two injections.  I don't feel any difference in my ear yet and now have loud tinnitus.  I will try what you have mentioned for vitamins.  At this point - I am open to trying anything.

Thanks-
Ellen
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6899126_tn?1385915764
Hello Ellen,
Just curious, did this follow a high stress event for you?  Something big happen within the 72 hours prior?  For many of us, that seems to be the triggering of this SSHL.

Controlling your stress level seems to help with the hissing sound I have, which gets louder and more distracting if I am tired or stressed.  Now, after 3 months, some times it seems to have faded completely; I only become aware of it when I get tired or stressed.  Perhaps I am just getting used to the sound being there.  My ENT did tell me to NOT focus on the sound, as that makes it get worse.
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Avatar_m_tn
Has anyone heard about Shea Clinic in Memphis? I've heard their patients have a recovery record of 90%.

Anyone with first hand experience of hyperbaric oxygen therapy? Did it help? is it dangerous?
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Avatar_m_tn
Greetings,
Thank you to all on this site, I've been looking for something like this since I experienced SSHL on Jan. 7, 2014.  Within 3 hours I was 100% deaf in the left ear with tinnitus & some balance loss.  Went to the ER that night and they started me on 60 mg prednisone.  My ENT continued that dose for 3 weeks and now I am tapering off of it.  He also gave me 1 IT injection but said with my symptoms only a 20% chance of improvement.  I gave him an article about Hyperbaric Oxygen Treatments and he referred me to another hospital in Milwaukee that has 2 chambers where I started treatments Jan. 27th.  I've had 8 so far.  Still 100% deaf in left ear, tinnitus is getting worse but balance is 70% normal.....also been taking gingko, magnesium, zinc & vitamins & had 2 acupuncture treatments.  Hoping & praying something works.  
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Hello all~
I, too, had the classic symptoms of SSHL after waking up 3 days ago to sudden deafness in my right ear.
I do not have vertigo or dizziness problems, just the deafness.
On that day, I did my usual proactive research so I was not at all shocked when the very next day my ENT diagnosed with SSHL.  All of the research I have done myself leads me to believe that recovery (partial or full) is so hit and miss even with extremely prompt treatment with everything that has already been mentioned before.  My ENT also indicated to me there is no conclusive evidence that steroid treatment, in any form, is beneficial or not.  Either way, he gave me a 50/50% chance of regaining any hearing.
However, I did opt for the oral Prednisone treatment as he suggested.  After countless hours of researching, I am now left wondering if what he prescribed is the correct dosage.  This is how it was prescribed for me on a tapering schedule which I began on day 3 of the onset of SSHL:
10mg Prednisone taken in this way:
Day 1 through day 4 - 1 tablet 3 times a day for 4 days=30 mg/day
Day 5 through day 8 - 1 tablet 2 times a day for 4 days= 20 mg/day
Day 9 through day 12 - 1 tablet a day for 4 days=10 mg/day
Day 13 1/2 tablet for 4 days=.5 mg/day
Total 16 day treatment.
The doctor was concerned for me to take steroids because I suffer from panic/anxiety and have a lot of digestive issues.  I am wondering if this is an adequate dosage or if he gave me less than normal due to my other conditions?
Does anyone have any info on that?  I have read over and over that 60 mg/daily is what's is typically prescribed, however, I'm not clear if that is a tapering schedule or not.
Finally, to any of you who have had the tympanic injections:
I have read horror stories on how painful they are, i.e., feeling like acid being poured into the ear and then also people began symptoms of vertigo, something I am not willing to live with having had that once many, many years ago.
What has been your experiences?
It's so upsetting to me that I am currently away from Maryland where I believe the best medical care is provided.
Unfortunately, I am currently in South Florida where medical care is the worst!
Any help that anyone can provide with regard to the Prednisone dosage I am on to advising me of any centers or doctors to see will be greatly appreciated!
I wish all of us the best possible outcomes and thank you again.
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Hi there, and sorry about your hearing loss. If I remember correctly, I was started at 60 mg for 3-4 days and then tapered gradually over two weeks. That seemed to be the standard 15 years ago, but I don't know if that's still current. I don't know why you were given a lower dose. However, I think you're right that treatments are hit-or-miss and there's not really good evidence for the steroids or the dose, or anything else.

The Silverstein Institute in Florida is supposed to be one of the best, I think.

I did not have the injections so can't advise you on that.

Good luck and I hope you get some hearing back. If not, there are now several good options for hearing aids for single-sided deafness. Take care.

Nancy
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Scary being away from home and needing medical care!  That just seems to add an extra element of worry.

I did have the injections, and no I did NOT feel that sort of pain you describe goodness!  Glad I had not read any of that prior to them.  

Anyone going this route, I highly suggest you TALK to the ENT, tell him / her you want them to explain what they are doing every step of the way.  I even reminded my ENT of this for the second one.  By the 3rd one I didn't care and he worked quietly.  And remember DON'T look!  You can't turn your head and see what the doc is doing, lol, it is just not possible for your eyes to see your ear!

The ENT has you lie on your back and tilt your head away from him, to get the involved ear facing up.  He has a huge magnifying glass he uses.  First thing (after visual inspection) is a Q Tip swab with a local anesthetic.  This goes in and touches the ear drum to numb it.  The ear canal is extremely sensitive, but the ear drum has no sensation.  So the ENT works hard to go down the 'middle' and not touch the sides of the canal.  Then you wait  for the numbing to take over.  During this time, the ENT is preparing other stuff, writing notes in your chart, etc.   I had 3 injections and once the doc did step out of the room, as one of the staff needed to ask him a question.  Still, very short time frame.

Next, the doc uses a scalpel  to make a teeny tiny hole in the drum.  With this, you hear a buzzing, like a mosquito is right next to your ear -- odd, an ear which is not hearing hears this!  No pain.  Weird sensation to have hearing, no feeling, lol.  

Finally, the doc uses the teeniest syringe needle to put in the liquid.  With this you feel like you got water in your ear, such as if you stand in the shower and turn your ear up to the water.  I did NOT look at the syringe or needle until AFTER the third and final injection -- I really did not want to know until it was all over.  

Now you just lie there for 10 minutes, letting the medication do its thing.  There is a great video on youtube which I watched over and over prior to the first injection.  Let's see if I can find it now and add the link:http://www.youtube.com/watch?v=FyZ0OLFEAm8&list=PLE5FB5A342BAEEA3C

I used this to watch the PATIENT reaction, which was almost nill.  My ENT laughed when I told him about the '5 things to remember ' at the end.  Especially no swallowing for half an hour?!    So, there are some differences doc to doc.    But that vid helped calm me before hand, quite a lot.  

I never had the oral pred, nor did I have any vertigo.  The tinnitus set in about a month after the fact, which also is one of the 'normal' paths.  My ENT said not to focus on the sound - play music, have the TV on, something, so the brain does not  learn to focus on the sound.  

My SSHL occurred Oct 21, 2013, so almost 4 months back.  I have recovered some hearing, and I only notice the tinnitus when I am overtired, or really stressed.  I have a hearing retest at the 6 months mark.  

Wishing you all the best.

Next
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Avatar_f_tn
Thank you so much for your reply to me.

I cannot seem to find when your onset of symptoms began and how long it took you to be diagnosed.  Were you within the 2-4 "crucial" time frame window to get your diagnosis.  As I said, I awoke on 2/13 and saw the ENT the very next day and began the oral Prednisone early the 3rd day.
How long did it take for you to regain partial hearing?
My ENT never suggested the injections (he probably doesn't do them) and I have read over and over again they are no better and no worse than the oral treatment.  I was considering to do both.
I have to say, this morning, which will be begin my 3rd day of Prednisone, I
THINK I am hearing a tad better out of the effected ear and the fullness doesn't seem as profound as it was, but that seems to be the case just following getting out of bed anyway, so we will see.
Thanking you in advance!
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To answer your question:  I woke Oct 21 2013, fine.  Got up to walk to the bathroom, between steps 3 and 4, still in the bedroom, my left ear filled.  I saw my PCP that same day; she thought I had a full Eustachian tube, and prescribed Flonase inhalant.  After 10 days of no improvement I contacted her via email and she referred me to the ENT.  Had to get in to see him, and then start the injections, so the first injection was almost 3 weeks after onset.  The improvement in hearing was NOT noticed by me; that showed up in my second hearing test at the ENT office, which was 4 weeks later.  One injection per week for 3 weeks, one week break, then the retest.  I was quite surprised when the audiologist told me things looked much better on her report (the ENT had to deliver the details).  At that point, the tinnitus has also started - constant hissing sound.

Hope this answers your question!
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Avatar_f_tn
Today will begin Day 4 of my oral Prednisone treatment.
I also am going for my MRI today.
As of late yesterday, I am feeling/hearing a slight improvement in my effected ear!!!!!!!!!  Perhaps it would be considered as more than slight.
My ENT will not follow up or order any additional hearing tests again until he receives the MRI report but I I know I can now hear things I couldn't 5 days ago and the awful clogged feeling, pressure and sounds have subsided.  It's by no means near perfect but am hopeful this is the beginning of regaining full hearing back in my right ear!
The only thing I can possibly attribute this to is the immediate diagnosis and treatment I received, both within 24-48 hours upon wakening deaf in my right ear.  So, I implore anyone visiting this site to seek immediate attention with an ENT doctor when you first notice this has happened to you.
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Avatar_m_tn
Well it seems that SSHL is quite a common occurrence!

My situation is probably a little different, I have a congenital hearing defect known as Large Vestibular Aqueduct Syndrome which basically means that the fluid in my membranes slosh around more easily when there is a blow to the head.

I had a blow to the head when I was 10 and lost all the hearing in both ears. An operation was done which repaired/inserted an oval membrane into the stapps.

Another blow at 20 and again, lost all the hearing in both ears. High dose of prednisone and trental for around 3 weeks. Took about 6 weeks for hearing to come back in the left ear, and nothing usable in the right. Had a cochlear implant done on the right ear, and have a hearing aid on the left.

Now, 10 years later (funny how history keeps repeating!) another blow to the head and again all the hearing lost. Have just finished the prednisone course and still on the trental. I'm hoping that the tinnitus will die away (its good that it's still ringing as it means that there is some feeling still in the nerves) and then the fluid imbalances will settle down.

Its very much a wait and see game unfortunately. Have to prepare for the worse, but hopefully the trental will do the trick and decrease the blood viscosity enough that the hearing will come back to a usable level with hearing aid on the left ear.
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It has been about 6 months since the onset of my sshl. Have been through various treatments and still deaf on the left side. I have a question for anyone who can answer it. I have a hypersensitivity to sound now which prevents me from playing gigs (I;m a musician) and does anyone know if that hyperacussia I believe it is called, will subside?  -Roy
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It hasn't, for me, in 5 months.  Also, keep in mind, you now have ONE good ear, you need to protect it.  Use ear plugs around ANY loud sounds, such as lawn mower, snow blower, etc.  Ear plugs are rated, I bought mine on Amazon, get the highest rating.  

While I don't work as a musician, I do play 3 instruments, and used to love listening to music - concerts, CDs, etc.  Have not been able to do this since onset.  And I did not completely lose hearing in the effected ear, just much reduced hearing.

I am sorry you -- and all of us -- have to deal with this.
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Roy--yes, I had that too, very annoying. But it eventually went away completely (as doctor said it would). It took many months for me, but it did go away. Your brain needs a lot of time to adapt, but it will. Sorry you haven't got your hearing back.
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Avatar_m_tn
Hi everyone,

I'm 36yrs old, relatively healthy male who doesn't smoke or drink.  I exercise semi regularly and eat a reasonable diet with the occasional junkfood.  I was diagnosed with profound sudden SNHL.

Last Wednesday, Feb 19th I woke with my left ear feeling stuffed and with hearing muffled. I could hear my fingers rubbing beside the ear, but voices sounded electric and like chipmunks.  I thought it was a stuffed ear, after doing some research on the web.  On the second day there was no change and I took some Sudafed to see if it would help.  On day 3 it got slightly worse, but by the night of day 3 I was stone cold deaf.

I went to see 2 doctors on Saturday, the first blew me off, but the second thought I might have Labyrinthitis and put me on 50mg of prednisone per day.  On Monday I went to see my family doctor and he immediately recognized it as SSNHL because he's had patients who had it before.  He referred me to an ENT the next day.

The ENT did a basic hearing test but didn't really give me much advice, he said he'd see me again in 6 weeks.  

Not satisfied with this I did my own research and found a local otologist/neurotologist and then got my doctor to refer me to him.

That brings me to today.

Today is day 10 since onset, day 7 of prednisone, and the Otologist gave me a very thorough hearing test showing 90-100db loss in the low frequencies, and severe loss in the upper registers.  Word Discrimination is basically nil.

Prognosis is not good, but he agreed we should try everything.  I got my first intratympanic injection today, and they scheduled me for Hyberbaric Chamber on Monday morning, and second shot on Monday afternoon.

I don't think any of this will help, because I didn't get prednisone till day 4 and only 50mg/day to start.  I got my first shot on Day 10, and Hyberbaric will be day 14.  The otologist was also veyy caring but honest in that none of these treatments have very solid evidence behind them, but I am very hopeful, and for the first time since this started, I am at peace because I believe I and the doctors are finally doing everything possible for me.
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6899126_tn?1385915764
Your situation is, sadly, quite normal.  This sshl is not well recognized by many docs, and the treatment for it seems to be hit - and - miss.  Some things work for some, some things work for others, and there is no way of knowing which for whom.  

The fact that your PCP has seen it before and hence recognized it, is encouraging.  My PCP did not.  I found the info on the Mass Eye and Ear site the most complete.  (See here:  http://www.masseyeandear.org/for-patients/patient-guide/patient-education/diseases-and-conditions/sudden-deafness/ )

I actually set up a page, with the link and copied the SECOND paragraph under SUMMARY AND RECOMMENDATIONS which starts:  The critical first step . . . .  I printed that out and took it in for my PCP.  She is part of a much larger practice, so I felt at least I could help spread the word.  She was very appreciative of the page.  

Best wishes with the treatment.
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I agree with Freedom2Be, your situation is sadly familiar. I hope you get some hearing back. Don't give up hope yet. If you do remain deaf in that ear, there are some good choices in hearing aids now. I have a Baha and it works great for me.
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Good for you for trying to educate your PCP. I saw or spoke with two different GPs in the first few days after my hearing loss (though I was more concerned about the dizziness at that point, thinking I just had some kind of "plugged" ear) but they didn't even do a tuning-fork test, they just blew me off, and my hearing loss wasn't diagnosed until a month later. When I had done some research and realized this should have been treated as a medical emergency, I wrote informative letters to both GPs with links and information. Hopefully they now pay attention when someone comes in with a sudden-hearing-loss story. Who knows. (They never acknowledged my letters and I never saw them again.)
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Nancy, I should add that the reason I sought out an otologist was because of some of your posts dated 2007-2009 insisting on an Otologist/Neurotologist over an ENT.  It happens that here, our Otologist is a particularly empathic and caring doctor, and my ENT was very matter of fact and not too concerned about me.  However this turns out, thank you for putting me on that path, because being at peace with having done everything I could is he only way I can bear how I handled this.

I have taken the additional step today of seeking out a private clinic to do Hyperbaric treatment earlier (day 11).  I promise to report back here however my case turns out in the next weeks and months.

Thanks to all for sharing and best of luck to everyone who suffers from this from before and in the future.
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Thanks NancyT. I'm thinking that if the hypersensitivity goes away I can get some crossover hearing aids and start playing again. As it is now, I have to wear ear plugs most of the time, even in the shower. If not, my tinnitus and fullness in the head increase immediately. I did get a custom made set of ear plugs as Freedom2B suggested and they help. My vestibular therapist encouraged me to start picking up the acoustic guitar and playing for short periods of time.

Just a note to everyone, the Hearing Health Foundation is doing some great work on the regeneration of inner ear hair cells in mammals. In fact, for the first time in history the recovered the hearing in a mouse; the first time for a mammal. Here is a link: https://hearinghealthfoundation.org/

I have a new CD coming out and will donate a dollar from each one sold to this project. -Roy
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Just want to ask. Does Neurobion forte help for this? I have recently being diagnosed and my doctor prescribed me neurobion forte. I have stopped taking it given the side effects. But if it gets me hearing back I will definitely take it.
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We do not have that here in the USA.  But reading online, seems that is just the B complex of vitamins. It is a multi vitamin supplement of B vitamins.   No, it does nothing.  You need a steroid, either prednisone oral, or the intra-tympanic injections of dexamethasone.

I would suggest you see another doc asap as it sounds like the doc you saw does not know what to do for sshl.

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Avatar_m_tn
My SSHL happened the day after Christmas 2013. It started with severe vertigo that lasted 12 hours. I saw my GP who misdiagnosed it and when my hearing was lost 3 days later I saw an ENT the day after New Year. I did the usual steroid thing. Now I wait. I originally had a profound hearing loss. I could hear absolutely nothing in my right ear. I did get some of it back after a round of steriod injections, and after 2 months have just started to be able to recognize words and the sensation is beginning to return to the parts of my ear that were numb. I think it's getting better slowly and I have not given up hope of a full recovery. I am a firm believer in the power of positive thinking.

It's normal to be scared and frustrated. I would encourage anyone who is having trouble coping to hire a professional life coach or see a therapist. Doctors do what they can medically but they're not so good at the quality of life issues hearing impaired people face.  
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Glad I stumbled onto this thread, my SSHL started very much like everyone else's here.  Woke up one morning..., misdiagnosed..., several weeks to get tested and then finally start treatment.  I lost my right hearing 7 weeks and two days ago, loss of balance, nausea, tinnitus with that awful buzzing going off in my head non-stop.  Going to work is a chore as I work in an open office environment with lots of background conversations.  I go home exhausted from having to concentrate to understand people.  Restaurants are no fun anymore as is listening to my favorite music.  My heart goes out to those of you who work in music industry on this thread, it must be crushing.

Anyways, finished two oral sets of Prednisone and only got my first ear injection yesterday.  After reading many of the medical journals about early treatment, I have very low hopes of success.  I get the feeling I'll need to be exploring lots of new options and I was glad to see you all discussing this here.  I'll finish my set of three injections 22 Mar and assume I'll be on my own to find ways to cope, so I intend to keep up with you all and share my experiences too.  I'll probably start with the easy stuff, the vitamins, and look into chiropractors and acupuncture.  I had good success with acupuncture and lower back pain so I have some confidence there.

It's nice to be able to talk to folks who are experiencing this same thing.  Not that misery loves company, but I keep getting the feeling that when I bring up what I am going through with people, they are on the verge of saying, "What's the big deal?  You still have another ear don't you?"  I find I'm a lot more irritable now, jumpy, and hyper sensitive.  Just this weekend, an announcement on a supermarket intercom nearly brought me to my knees.  People say they understand, but I'm not sure I would if the roles were reversed.  I'm still angry and scared - (haven't had the MRI yet, could only schedule me for 25 Mar) so I'm still waiting to get by all the real scary stuff.  But like most of you, I want to focus on the positive and fight my way out of this.  Nice to know I've got some folks to share this with.

Good Luck to all of you!
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I agree, others do not seem to understand what we are going through.

In fact, one of my friends, her mom lost most of her hearing in one ear as a young girl at age 10 -- NOT from sshl.  Even the MOM does not get what I'm going on about.  UGH!!  

I did not need an MRI, my ENT was sure what is going on -- or should I say, not going on in my ear?  

The irritability and huper sensitivity do taper off some (not completely) with time, as your brain adjusts.  

You mentioned you will try the vitamins, don't forget the ear plug for your good ear.  I'd like to know if you find any improvement with either acupuncture.  I don't see how chiropractor will have any impact on this issue, sorry.

Come back and let us know how you get on!
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Hi everyone,

I promised to update all of you regardless of how things turn out, and for me I have seen dramatic improvement, so I hope this gives some of you hope.  I've chronicled my situation, but let me start by saying that I was measured profoundly deaf on Feb 28th with 10% Word Distinction (I could barely guess at 1 word) at 90+db.

2 days ago I was measured using headphones without masking (which is less accurate), and they found I had improved to 35-50db, with the ability to distinguish words at higher volumes.  This is a FANTASTIC improvement and the Otologists were very surprised.

Here is my journey, it is ongoing now, but involves self research plus pursuing every available treatment including oral prednisone, intratympanic dexamethasone, constraint induced music therapy, and hyperbaric oxygen.

Day 1: Woke up with strange hearing in left ear
Day 3: By evening left ear was completely deaf, no tinnitus
Day 4: went to 2 clinics because my family doctor doesn't work on wekends, was given 50mg/prednisone per day after seeking second opinion.
Day 5: Started taking Vitamin E (400IU) and Magnesium (500mg) and Vitamin B100 complex.
Day 6: saw my family doctor, he immediately recognized SSNHL and upped prednisone to 70mg/day plus booked me with an ENT
Day 7: ENT told me there's nothing he can do, and asked me to check back in 6 weeks.  Found new research dated Jan 2014 where good results were achieved using Constraint Induced Sound Therapy.  Started trying this even though I cannot hear the music AT ALL.
Day 9: I found an Otologist, and insisted my Doctor to refer me, the Otologist fit me in for an emergency visit.
Day 10: Saw Otologist, they measured Profound Hearing loss below 1000Hz and 75-85db above 1000Hz.  Was given very grim prognosis (less than a few percent chance of any recovery).  Offered intratympanic injections plus hyperbaric oxygen.  Got my first injection.   That night after firs tinjection I thought I could hear my finger snapping right beside the ear, it sounded distant and like static.
Day 11: started hyperbaric oxygen
Day 12: I think I can hear my electric razer buzzing beside my ear, it is very light and distorted but something is definitely there.
Day 14: 2nd intratympanic injection.  I can defintely hear my electric razer buzzing, and I can hear some sort of something that might sound like voices? I can actually hear the music slightly during my sound therapy sessions.
Day 15: Dr in charge of hyperbaric unit said patients they treat have a 50% chance of 50% improvement, and he thinks me prognosis might be decent because I am responding to intratympanic injections.  At night I can hear my bedsheets from my left ear, they sound distant and mysterious, but there is something there.  This is HUGE.
Day 16: 3rd  and last intratympanic injection.  Quick Audiogram screen shows improvement to 40-55db with 85% word distinction at higher volumes.

This brings me to today.  Every day I have been taking Vitamin E, Mg, B100 complex, and eating lots of healthy vegetables and foods strong in Folates, B vitamins etc (daily diet consists of boiled eggs, turkey, lots of raw carrots, 1/4 avocado, spinach, kale, plus a vegetable smoothie using grapes, orange, celery, kale, and mixed greens).  The idea is B vitamins, folate, and Mg help convert homocystein.  Vitamin E shows in some studies to have a marginal effect.  I avoided using Zinc because some dieticians theorise it might interfere with steroids (it boosts immunity, which is counter to how steroids act to lower inflammation).  I also took the constraint induced sound therapy quite seriously, as the study is very recent and the ideas are sound (the idea is that the brain starts to remap itself to use the good ear), plus also modest sound stimulates the hair cells and might induce more healing.

My personal belief is the combination of all these therapies helped each other out.  I'm not out of the woods yet, but right now I can hear from  my left ear eve nthough its not clear.  There's still that feeling of fullness, voices sound robotic (less each day), and there's still light tinnitus.  I'd rate the tinnitus at 2-4 out of 10, while 8 days ago it was definitely 8/10.  I have no more intratympanic steroid injections schduled and my prednisone is tapering now, but I will continue music therapy with HBO.  

The music therapy is just done at home on headphones, and I listen at BELOW loud levels, even when my ears couldn't hear it, I believed the sound was stimulating the nerve.  The music sounds distorted and not great, and quite dead and empty compared to my good ear, but at least I can tell it is music.  I'd say it sounds 65-75% as good as my right ear.  Here is the study on this type of treatment:  http://www.nature.com/srep/2014/140129/srep03927/full/srep03927.html

I will report back again in a week or so, and I will continue to take detailed notes.  I wish I could get to within 10db of my good ear so I could have true binaural hearing, but this improvement has already been a really blessing.  Good luck to everyone and I hope these notes help.
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I should add that I was not responding to the prednisone almost at all from Day 1-9, so I was desperate when I was on day 10 seeing the Otologist.  I am 100% sure based on my detailed notes that vast majority of the improvement occurred starting the day of the injections and/or HBO treatment, because each day got better and better. But once I hit a certain point the improvements slowed down.
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Great news that you've seen so much improvement! You really went into this full force, and it looks like it's paying off for you. Thank you for letting us know you've had at least some recovery--wonderful!

I'm glad my earlier posts led you to get yourself to the best specialist possible. As you say, no matter what, you'll be able to live with yourself because you tried everything you could. As I wrote to the two GPs who blew me off that whole first month, there's no way to know if my hearing could have been saved, but I wish I could look back and feel I was given every chance. Actually, though, I am not much bothered by that... my hearing loss is not a big problem in my life, especially now that I have the Baha to help out at work and in social situations.

Keep at it and keep us posted! :)
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Good luck, Alexandria--I hope you get your hearing back, or at least some of it. Gosh, I remember that jumpiness in the first few months-- announcements or noises at the grocery store made me jump out of my skin while everyone else wouldn't even flinch... a cat sneezing made me jump off the couch... the sound of tape ripping or even my son tearing a reply card out of a magazine in the car with me, those things were SO loud and annoying! But gradually that hypersensitivity went completely away. I'm completely normal in that respect now.

I think you'll find that eventually you can handle work, restaurants, etc. much more easily and with less fatigue. Especially when the hypersensitivity goes away and you get some kind of hearing aid, if your hearing doesn't return. (But I hope it does!)

Good luck,

Nancy
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Glad you have had at least some improvement--good luck and please keep us posted how you're doing!
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P.S. You won't be "on your own to cope"--even once the doctors have done all they can, you should remain connected with an audiologist to continue to follow your hearing, at least for a time, and certainly to get you any hearing aids you might need. The audiologist is going to be your friend!

I had so many hearing tests that I know all their words by heart: airplane, baseball, cowboy.... :)
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Thank you for writing and sharing everything you did.  I am so pleased for you that this has worked for you and your hearing has improved so much.  

Frustrating that you had to do so much research and advocating for yourself.  Somehow, we need to get more medical professionals educated and on board for dealing with this promptly.

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I've just been reading your link to the study, on constraint induced sound therapy.

Could you please detail for us how you did this?  I mean, did you buy any equipment, modify headphones, use ear buds or actual head phones?  Thank you in advance!
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Had my 3 month haring test today.  This is 3 months since the 3 decadron injections.  My hearing has declined back to where it was prior to the injections.  So the ENT wants an MRI to rule out a neuroma (?) and we will do the injections again.  If my hearing improves again with the injections, he wants to put in a tube and have me put in decadron drops daily, starting at 5 drops once per day.  And over time, see if we can taper off.

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Re: Constraint induced sound therapy.

Please be aware the study only selected users with less than 50db hearing loss.  Profound hearing loss like mine were excluded because the patients would not hear a thing during therapy unless the volume was really high, which would cross over to the good ear anyway.  I decided to do the therapy anyway since it costs nothing except time and hope.

Here's what I did:

1) I used headphones on a PC computer and set it to only output audio in the damaged ear.  You do NOT want music to be coming into the good ear.
2) I used a standard ear plug (rated at 25db) and wore it on the good ear, and covered it with the silent headphone.  The purpose is to filter out background noise.
3) I picked non aggressive music, like classical, orchestral, country, etc that tended to have a consistent volume.  I think music that fluctuates at extremes of volumes is not useful.  The study used classical music.
4)  I  used my good ear to find a comfortable listening volume.  I did NOT try to raise the volume high enough for the bad ear to hear it.  Instead, I chose a listening volume that should not damage hearing.
5)  I used my good ear to make sure that 5-6 songs I was using had a consistent and safe volume throughout.
6)  I switch the sound to the bad ear, and tried to do this therapy around 2-5hours per day.  The study required participants to do it 6 hours a day, which may not be realistic for some of us.
7)  Every chance I get I do the therapy, and I also test the volume every few hours to make sure nothing is changed.
8)  Make sure the computer's volume is not too high.
9)  I did not bother to equalize sounds the way the study suggests, since I could not hear any sound at all on the first few days.
10)  Once I started to hear the music, I tried to compare it between left and right ears to gauge how bad the damage is. I also forced myself to pay attention to the music in the damaged ear to make sure my brain recognizes the song.  Eventually even when it was really distorted I started to recognize the different distortions as specific songs.




Some key take away points:

- the theory behind my approach is that even if I was totally deaf, stimulation of the cochlea hairs has shown in cited studies to improve certain function and potentially promote healing (refer to the study's rational and discussion)
- as I started to hear a little bit, I would sometimes increase volume a little bit just so my brain knows something is there.
- Once I could distinguish that it was music, I started to play around a little bit with the equaliser to see if I could make my brain think it sounded more normal, as the study's participants were asked to do.  I found this not too easy so I didn't focus on it too much.
-  In my mind, even if my chance of any further improvement from here on out is very slim to none, I will continue this therapy to keep my brain trained to know the left ear is there and still trying to function.  Part of the theory behind this treatment as I understand it is that as the brain cortex remaps its hearing function to the better ear it might not "pay attention" as much to the bad ear.  My main concern here for all of us is that if our bad ear's nerve starts to recover and send signals to the brain, the brain might not be listening anymore to that nerve.  
- I don't know if CIST helped me, I might have been saved by the intratympanic injections + HBO, but I think the theory behind CIST cannot be ignored, there's too much research behind injuries and cortex remapping that indicates enough correlation to take this seriously.  I think for people who have less loss it should be a MUST TRY.

That's why I decided to go ahead with this therapy once I could hear just barely anything and even though it all sounded like distorted buzzing instead of music.  But even before that, when I could hear nothing at all, I wanted to make sure the hairs were stimulated.

Here's an excerpt from the study discussion, keep in mind this is conjecture and theory, but based on cited research the theory makes some sense:

"Several studies have reported that sound stimulation dilates blood
vessels and increases red blood cell velocity in the cochlea 71–74 .
Improving the microcirculation of the cochlea could be effective in
limiting noise-induced hearing loss 75 . In the present study, the expo-
sure to music, which has complex spectral and temporal properties,
mighthaveeffectivelyandspecificallyincreasedthebloodflowinthe
affected cochlea, and therefore may have dissolved the oxygen defi-
ciency,whichisapotentialSSHLcause.Eveniftherewasnohypoxia
in the affected cochlea, by supplying oxygen and substances neces-
sary for restoration and by removing toxic substances, the increased
blood flow may support the recovery of damaged cochlear tissues.
Moreover,activatingthefunctionalinnerhaircellsintheaffectedear
bymusicmayhavepromotedthereleaseofneurotrophins,whichare
necessary for the survival of the auditory nerve fibers, and may have
facilitated the repair of damaged auditory nerve fibers 76–78 . Electrical
stimulation in the cochlea of deafened guinea-pigs has also been
shown to promote survival of spiral ganglion neurons 79–81 , and the
combination of electric stimulation and neurotrophin infusion
appears to further improve and maintain hearing recovery 82,83 . The
music stimulation applied in the present study may also have facili-
tated both the neurotrophin release and the auditory nerve fiber
activation, leading to better hearing recovery in the SCT 1 CIST
group.Thefunctional recoveryofthe cochleaandtheauditory nerve
fibers of the affected side may be able to compete against the newly
establishing neural connections between the auditory cortex and the
intact cochlea. Thereby CIST may affect both the peripheral and the
central structures, and most importantly the interactions between
them. Without the peripheral improvement, afferent firing would
still be reduced, and the central structure would always seek supple-
mentary stimulation from the intact cochlea. Without the central
improvement (i.e. undoing the maladaptive reorganization), the
improvedperipheralfiringwouldstillbeignoredandwouldnothave
itsoriginaldestinationinthecortexanymore.CISTwouldcontribute
to breaking through this vicious cycle of peripheral damage and
maladaptive cortical reorganization."
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Thank you! I will work on getting something set up for myself.  My ENT was not aware of this study, I took the link in to him at yesterday's appointment.
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Hello everyone. I LOVE the interactions that have been going on in this community. The sharing and support are fantastic.

This thread was begun in 2011 and is getting rather lengthy, to the point where it nearly cannot be accessed on mobile devices (you have to click "more responses" 10+ times). I would like to ask that new users post their questions and experiences as new threads, if possible.

Creating a new thread is easy to do. Go up to the top and click on the orange button that says "Post a Question." The box to ask your question pops up, and it is easy to see what to do from there.

If you cannot create a new thread, no problem, go ahead and post here. I'm just trying to be a good moderator and make this awesome community more user friendly.

Also, you can follow this community, which means you will get an email when a new question is posted. If you like to help others, this is a good way to know when a new and (usually) scared person posts a question.

To follow the Hearing Loss Community, scroll to the top of this page. Click on "Back to Community." Scroll to the bottom, just under the questions. Click on "Follow this community."

You are a great group of people! Thanks for everything you do!

BC
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Thank YOU, BC, for your great and friendly advice on this forum!

I agree, it would be helpful to start new threads instead of endlessly adding to this one. I don't know if this one could perhaps be made a closed "sticky" thread, since it has so much info and seems to get so many hits.
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So glad I found this site.  I lost my hearing in my left ear this last Monday.  I had had some pressure in the ear the Thursday before and my dr. told me it was fluid.  Then the hearing loss on Monday.  Went back to the dr.  Continued with the fluid diagnosis and put me on prednisone.  I got into an ENT the next day and was diagnosed with SSHL.  Started on 60 mg of prednisone for two weeks..  Had an MRI today to rule out a tumor.  Ive had three days of prednisone.  Dr. will try the injections next Tuesday if no change in my hearing.  I'm very interested in the vitamin idea.  I really have no questions right now.  Just playing the waiting game.  I have not been to work since it happened.  I teach first grade and Monday was a nightmare with the noise.  Couldn't hear out of my left.  Seemed like the right was taking in all and every noise and then the left ear started squealing, vibrating, water falling, etc.  crazy.  I hope this is not the end of 37 years of teaching first grade. But trying to stay positive.  Will be glad to get back the MRI results.  So nice to find this site and know there are others "Quietly" plugging along.  
Theresa
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my story,
im 30 years old,I have had moderate cookie bite/u shaped hearing loss in both ears for many years which is effected by sudden loud noises along with moderate tinnitus in the right caused by noise. I had learnt to adapt and make use of what I have got and don't wear hearing aids.
things changed in February when I had a bad sinus/head infection, my right ear (better of the 2) went all full and numb and felt like it had gone almost totally deaf, I could barely hear my own voice and what I did hear sounded really distorted, had my ears checked a couple of weeks later, no fluid in the middle ear, no eaustation tube disfunction. and a change in db levels across all frequencies especially the 4k frequency which used to be the only perfect frequency in that ear. I went into total melt down as this was my better ear and really struggled to hear.
had several weeks ofwork and panicked as have a family to provide for. slowly my hearing had felt like it has been improving.
had my hearing tested the last week and most frequencies are back to where they were except the 4k and 5k, now right  250=55, 500=60 1k=55, 2k=50, 3k=35, 4k=40, 5k=25, 6k=5,7k=15, 8k=25.
the tinnitus is what killing me as 4 weeks after the infection its got so much louder. very difficult to mask due to loudness. really feel for the people who have profound losses along with tinnitus. its been 3 months nowand with a little hope the 4k and 5k will return to where they were, even though still HOH I got used to them levels and the loss at 4k seems to have made a huge difference on what I can hear. have tried hearing aids over the past 6 weeks although struggle with them due to loudness/clarity etc,, and think they have made the tinnitus worse. the private hearing aid dispenser that I got them from said they wouldn't, im not convinced, as seen a NHS audiologist this
week has identified I have whats called recruitment which is when there is a fine line between not hearing a sound, to hearing the sound as loud as a someone with normal hearing as the volume increases slightly. as if volume jumps up really suddenly, which may be why ive managed so long without hearing aids previously.
after reading some of your posts where the hearing continues to improve, it gives me the hope that the hearing will return to pre infection levels. which is what I managed with. SSHL and tinnitus is awful for anyone to deal with,
here in the uk it seems doctors and ent's don't know what to do, I wasn't prescribe steroids or anything and the GP refused to refer me to ent or prescride anything and said just see if it goes. hearing aids help some and not others.
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I'm sorry you have encountered all these hearing issues.  I found the hearing aid forums ******* and the folks on there were very helpful.  I am now trialing a hearing aid.  My hearing loss from sshl is permanent.
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I have had the same experience as many of you.  I would like to join this community and compare experiences. I lost all hearing in my right ear in Feb. of 2014.  I did the steroids and had the MRI and nothing so far has worked. It's so frustrating and very lonely.  I have tinittus horribly and I hope to find some friends and comfort here.  No one seems to understand.
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So glad to have found this site.  I had sshl in my left ear 5 days ago, was brushing my hair at the time and it just whistled and went completely dead.  Profound hearing loss.  Have seen an ENT who has ordered an MRI which I am having tomorrow.  I am so scared right now and I think I went into some kind of shock.  Couldn't stop crying and shaking.  My right ear is not coping with the extra pressure and any sort of noise sends my brain into sensory overload. Does anyone else experience this?  My doctor was already talking about hearing aids at the first consultation!  Scared the life out of me as just a few hours before I had perfect hearing.  Reading some of these posts gives me a little hope that at least some of my hearing may be recovered.  I am so depressed and tearful right now, feels like my life as I knew it has ended :(
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I hope your Dr. started you on steroids right away.  This is the common treatment for SSHL and it is important that you start as soon as possible according to the things I have read.  I was started on 80mg of predisone per day by my ENT the day after I first experienced SSHL.  I had SSHL in my right ear and my hearing partially returned after about one week of steroid treatment.  I still have tinnitus to some degree, but it is not too bad at the moment.  Good luck on your treatment and recovery
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Thank you so much for your reply.  A few days passed before I was started on prednisone and I am now 12 days post sshl.  As yet there has been no improvement and I have recently had an MRI scan and waiting for results.  I am with the consultant on Wednesday for a steroid injection directly into the ear.  Still hoping that there will be some recovery.  Will keep you posted, thanks again
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I had the intra tympanic injections.  There is a good youtube vid which shows you what to expect, it really does not hurt, just sort of weird feeling.  

https://www.youtube.com/watch?v=FyZ0OLFEAm8

My ENT laughed at the comment at th end about not swallowing, so don't worry about that.

I had a series of 3, once a week, waited a week, then redid the hearing test and I had improvement.  Then we waited 3 months, redid hearing test, I was at a worse level than before.  We tried the injections again, but no good.  I am now using a hearing aid in that ear.

Let us know what the MRI resutls are!
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I have followed this thread since my onset 1/29 probably caused by type 2 decompression sickness while diving. Did all the usual treatments i.e. oral steroid followed by 3 injections and even did 17  hyperbaric sessions but no improvement. I had surgery on 5/1 for a Ponto Pro Plus (baha) abutment and will get my processor early August. I am coping reasonably well but find restaurants and crowds difficult which the baha is expected to improve at least what I have told from users. While this condition certainly isn't desirable it is not the end of the world so fellow sufferers take heart. There is life after sshl. My tinnitus while not gone has substantially diminished. I did extensive research on the baha approach and feel it was right for me. It has been said to be an 70 - 80 % improvement by other users. Finally there is even hope for cochlea regeneration perhaps as soon as 5 yrs. My ent says 8 - 10 is possible  so again tke heart.
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MRI has come back clear so at least that is a relief.  Had my first injection into the ear drum yesterday with another one scheduled for next week.  I have been told that it could be 3 weeks before any improvement is detected but he didn't seem very optimistic that there would be any at all.  At least we would have tried.  

I am still trying to get my head around all of this - having gone from perfect hearing only 2 weeks ago to this has made me somewhat depressed and anxious.  I had another panic attack last night which is very frightening.  I just want my life back, maybe it will take time, and maybe, just maybe I may regain some hearing.  Thanks x
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How is your hearing doing now a couple of years down the line?  I am really struggling at the moment
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There is a grieving process involved, knowing this may help you cope during this time.

When I had the first series of 3 injections, then waited a week, then redid the hearing test, my hearing had improved.  That did not last and my hearing loss ended up worse than it had been at onset.  Tried the injections again, but that made no improvement at all the second go around.  I have now stabilized, which is why I am able to use a HA (hearing aid).  
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It is a year now since I lost my hearing in my left Ear. I think I am ready to give up hope and move on.
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I lost total hearing in my left ear on May 24th.  I was put on oral steroids (low dosage) first, then high oral dosage, then steroid injections in the ear.  After the second injection there was smallest of small improvement.  Got my third injection yesterday.  I'm hopeful that it will continue to improve.  I think what has me worried the most (and has the MOST impact on my life) is that my right ear is so sensitive to sound - especially in large crowds.  I have small grandchildren that I dearly love, and it is very hard to be with them.  The doctor says that my right ear will settle down.  Did you have these symptoms?  If so, how long did it take to change?  I feel so alone in this.  Nobody seems to quite understand how awful this is.
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I'm sorry you have experienced this.

Yes, the 'good' ear becomes super sensitive, and this does calm down in time.  Several months, for me.  

As you say no one seem to understand how awful this is.  Feeling alone.  That is why this forum is so helpful.  On here, WE do understand, and can sympathize.  It is a bit frightening, and there is a grieving process we go through, while holding on to hope.  

Having monoaural hearing was the hardest for me -- not being able to locate sound direction.  Driving, especially on the highway, having cars come up on my left and me not hear them, was scary.

I hope the injections continue to help you improve.
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I also am a musician, in fact a singer, and I had sudden hearing loss almost 7 months ago. I was told by an ENT that it would take a year to come back, and I am 3 months into that year. Some days it feels like it's getting worse, but I don't know if it's just equalizing somehow. I am also glad to find this forum to see how others are dealing with it. It's changing my personality, I have become quite quiet, since I can't hear what's going on most of the time. And people forget, or expect that I can easily adapt, since I still sound the same to them. It's so frustrating! Thanks for sharing your story.
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Well, I did get the CROS Hearing Aid on June 26 and have a 6 week testing period.  So far, I am extremely happy with
it.  I can find nothing negative about it except it is expensive, at least to me, but then again I got the best hearing
Phonak makes in my hearing ear.  The transmitter is only $1100.  If I decide I don't like it after the 6 weeks (and she
said the company will extend it for another 2 weeks if I can't decide) they will refund my money and I am only out $200.  What I like about it is the localization of sound.  I now can tell where the sound is coming from . . either my left side (deaf ear) or the right hearing side.  I like that my right ear is no longer terribly sensitive to sound . . that is gone.  And the last thing I like about it is that my deaf ear no longer feels stopped up . . feels like a normal ear.  They are so small no one even knows I have them on.  Just wanted you  to know since I told you I would tell you how I like them. Even after only 4 days, I am pretty sure they are keepers.  I probably should put something out on Medhelp, too.
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OOPS . . this is MedHelp and I just did post.  Sorry about that last
sentence.
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jhon79,
where can i buy the vitamins you are mentioning? online?

thanks
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Hi,
First of all , I am so glad there are others that can share their situation, I don't feel so alone now. I am curious, has anyone experience the loss of hearing in a gradual way. For me it did not happen in a matter of hours or a few days, but rather more like in a period of 9 to 10 days. First, this all happen after I took a flight to ireland on June 26th. After the second day, in the tour in a museum, I started hearing the voice of the speaker louder than usual and with an echoe sound, but than that went away, Than for a few days after I didn't have any problems, on the 6th day, maybe it happened again but maybe once. Than on the 8 th day, while in a room I started hearing the humming of a kitchens vent louder than it should have, Next day I was fine. By the 10th I noticed a small shell sound in my ear but the loss of hearing was very very small. After I arrived back in the US , that night at 3 am I woke up because I heard a strong humming sound in my head, it was not form outside but in my head, that is when I got worried. In the morning, my left ear felt clogged, adn I heard the shell sound again. went to the ENT and they did an audiogram and told me a had mild hearing loss, basically could hear 70% and started me with the injections. I am on my third injection but I only feel good right after the injection as the hours go by the clogged feeling starts again. This is my first week, day 7 th after that humming sound I heard when i returned. but it looks like for me the problem or condition has been developing over days not sudden. Has anyone had this experience too?

thanks

oxiuro
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The vitamins listed are very common, you can pick them up in most stores, grocery stores, WalMart, CVS etc.  

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Sorry to learn of your slow loss.  Did the ENT still call what you have SSHL -- SUDDEN Sensorineural hearing loss?  Perhaps you have a different diagnosis?  I don't know what else to say.

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That is a good point, i think I will ask for a second opinion. Thank you!
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I just want to give a status report on my condition because it is positive, and I think that people may like to hear positive outcomes.
I was diagnosed with SHL about three weeks ago. I started with the intratympanic injections on left probably about 10 days after initial symptoms (voices too loud in closed rooms that came and went away). My hearing loss (which was mild, like 20db below normal) didn't happen after 9 days of the first light symptom, and i was treated on the 10th day. I had 4 injections in the span of 2 weeks and I personally didn't think I was getting much better but the second Audiogram showed my left ear hearing was almost completely normal for the low frequency range and mild hearing loss at the high frequency 8000Hz. I was still hearing a mild shell sound (tinnitus) on my left ear and my ear still felt light to moderately full. During those two weeks, I experienced fluctuations of sensations in my ear. During some part of the day, especially in the afternoon my ear seemed to open up more, while in the mornings and late at night it felt more full. The hissing sound in the first two weeks was almost not there.  Since i heard that doing a combination of both injections and oral steroids proved to be fruitful in some cases, I went to see a second ENT for a second opinion. She was awesome. She told me also that it could be "cholear hydrops" which is a condition if inner ear pressure, which could if worsen develop into Menieres. But I do not have vertigo, never experienced it , so she thinks it is either SHL or "cholear hydrops", and only time will tell, because there are not tests. If my hearing goes up and down in time, it is probably "cholear hydrops", but if it recovers for longer than a few months and stays there , it is more likely that it is SHL. In any case, she agreed that oral steroids as a second follow-up treatment may help, so we started with them last week on Friday, so right after the end of the second week of injections. She also gave me information on "cholear hydrops" and how to change my diet to , if it is cholear hydrops, reduce the fluid pressure, by minimizing salt, caffeine, alcohol, and sugar and drinking lots of water Well it has been 5 days, and I can say that i have improved a great deal. The ear feels less "full", the hissing sound is receding by the days, slowly but I can tell is getting less, and I feel almost normal. The oral treatment is for 2 weeks with 60mg and then one week of tapering off. So I am very hopeful, that i may be able to get back to complete normalcy.  
Since last friday ( 5 days ago when i started the oral treatment of steroids), I completely cut down salt, completely cut caffeine (no coffed, no tea, nothing), completely cut sugar,  and I am drinking at least 84oz of water (9 glasses a day) . And I don't know but I think this change has also contributed to my recovery, as well as getting back my energy. I am never going to go back to drinking coffee, nor tea nor sugar and definitely not salt. Before this change I also used to drink a max of probably 3 glasses of water a day, which is nothing. I am also enjoying very much learning how to cook for the first time. I bought  books that specialize on no -salt foods and I must say food taste totally awesome without salt and sugar, because , for the first time I am really enjoying that natural flavors of vegetables and fruits, which before were overpower by salt. And I love spending time cooking , it is relaxing and I get a sense of satisfaction knowing what I am putting on my body and that I am eating super healthy.
Lots of vegetables, lots of fruits, especially banana, high in potassium.
I also started working out again, life feels great, even with not being completely normal with the ear hearing. If anything else, this change in my lifestyle, will make me healthier in my older age, and less susceptible to getting sick.
I also have a FitBit and I am using the app online to enter all the nutritional facts of the food I eat every single day, because I want to make sure I do not consume more than 500 mg of sodium a day. The recommendation for "cholear hydrops" is not to use more than 1500mg sodium a day, but I think being more cautious is best.
I also found out that relaxation is key, for abating the tinnitus. Taking a hot bath at night relaxes me tremendously and I can feel it in my body and in my ear. My ear feels better when i take a hot bath. These weeks I am also working from home to reduce stress in traffic and I am taking walks that I am enjoying thoroughly. One of the great things i find, is that now that I dont' want to listen to my iphone via headphones, I love walking without listening to anything, because I feel more present and like to listen to normal street noises, it is really fun and relaxing.
Anyways, I just wanted to provide an update, that hopefully may help people keep up their hopes up.

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Thanks xciuro for the info... These comments are great help.. I have SSHL yin my left ear last Friday...I seek treatment after 12 hours of loosing my hearing.. I'm taking 60 mm steroid daily.. Today is my 4th day... I can hear the low frequency sounds (not too clear) when I used a headphone.. I also drink too much coffee.. I'll stop it from today and plan to get some vitamin people mentioned here ... Hopefully all these help... Thanks for all the info... Great community and a lot of good info...I'll have a appointment on Thursday anfter 6 days of steroid  ... I'll keep you guys posted..
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