Sudden Hearing loss _{Page 39 of 105}

JeWel41 - Unfortunately, I have no idea about a forum that is generated in the UK. But then it takes time to find these forums in any case, I finally stumbled the other day on forums in French and German (since I read and write French and German).
It is interesting that in your reading research you have aligned yourself with the philosophy of the specialists of the Harvard school of Medecine in Boston. They still say, that so far they believe there is no proof that anything helps SSNHL except spontaneous recovery.
I personally do not believe it.
What I am also mad about is that none of my ENTs took the time and studied the time line of my onsets. As soon as they heard 'viral infection of the upper respiratory system', they all jumped to the conclusion that this is what caused it. I do not believe so.
I believe that doctors do not spend enough time to listen to what the patient is saying or reading (in my case) the printed file which I did of my time line of the onset. Then they do not take time to explain anything to the patient; What I know so far is what I read about it on the Internet and on forums like this one.
Take care

Hi Hope01, I don't necessarily agree that spontaneous recovery is the only option just that this is all that I have found in research studies. Much, much more research needs to be done but it is not life threatening so why spend taxpayers money??????(is this the crux of the matter) Doctors are very willing to fob you off and they seem completely disinterested in any history of previous problems etc I am shifting from really sad to really mad now with frustration. Surely if the hearing loss is truly sensorineural it can't come back and yet we all have a diagnosis of SSHL whether we recover or not, this does not make sense to me.

there is no way mine was spontaneous recovery. vritually impossible. also settlestans wasnt either. i dont know which one that i did that worked but i can gaurantee that something we did worked.

Hi JeWel41,
I live in the UK and am a patient at the Royal National Ear, Nose and Throat Hospital, London. I am not aware of any UK forums. I experienced SSNHL in my right ear on the 24.9.06.
I didn't receive any treatment for over two weeks due to GP ignorance. The GP immediately assumed that I had an acoustic neuroma even though this is a much rarer cause of hearing loss than SSNHL. My MRI was normal. GP's are very ignorant of this condition in the UK. The clinicians at the Royal National feel that steroid therapy 'is still controversial'. Fortunately I spontaneously regained a good proportion of my hearing within a few hours, but I still have high frequency loss (downsloping audiogram) and hissing tinnitus. My brain seems to have adjusted - at first I had terrible sound distortion and couldn't tolerate any loud noise. I can hear OK now, although hearing is muffled in my right ear, particularly in crowded, noisy places. I'm terrified that it will happen again. I have another app't at the Royal National at the end of January and I want some sort of guarantee from them that if it happens again i will be treated urgently with steroids.
Best wishes

Rosetta our recovery sounds much the same. I have about 55% hearing back but only 20 decibels of it in the higher frequencies, all sounds muffled on that side in shopping centres and noisy places, other than that I have gotten used to it and hear okay if someones speaking in front of me. Mine happened on the 15-9-2006, and I go back in March for an audiogram etc and may try a hearing aid if need be. Since I was last tested I think I have more back, only a little but I can hear more on the phone as it is amplified.

Mertie - rather than probably getting frustrated when you can't hear right, I would try out different digital hearing aids.
I have only one since there is no hearing left in the right ear, but I can tell you it is a God's send. I do not know what I would do without it.
I would hope that in Australia they also let you try hearing aids for at least 30 days, and if not satisfied you should be able to return it before you have to pay for it.
Here depending where you go, it can cost an arm and a leg (I paid $3,172.00 for one) but it is top of the line and fittings are included at the famous clinic where I go in Boston.
Good luck
P.S. Mine is a Savia 211 BTE from Phonak.

searching for links.

when searching for links i noticed that there is some common ties between my stomach problem and my hearing loss and now my frustration with balance.

I have had a swallon tender spot above my belly button and since my mom and dad both had hernias i just excused it as a hernia but i have had this for maybe 5 to 7 years or so. it happened one day when i was doing situps so i thought for sure thats what it was. now after hunting i was trying to find a common link between my swallon spot and my immune disorder and wouldnt you know there is 2 links.

one is candida and the other is Celiac disease.

basically we all know what candida is... its like a really bad yeast infection but Celiac disease is when your body cant consume gluten. your body is allergic to is. it cant absorb it. it causes nerve damage and more importantly is is a immune disease. i wonder if i may have this... i guess i will know soon enough ... they xrayed my chest abdomen and pelvic area today... this would be a tuff one because everything has gluten in it.

to read up more on it go to these 2 links.

1.
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.h...

2.
http://www.google.com/search?hl=en&lr=&q=Celiac+dizziness

Bonjour,

I am very lucky, my right ear is almost back to normal, only less sensitivity and a very small tinnitus that I get to hear when I am in a
quiet place.

Last monday, for the sake
of my health, I saw another ENT, in his practice, he always prescribe prednisone for 12 days plus an anti-viral. He really took a long time listening and explaining, he said that the first occurrence of SSNHL could be the beginning of maladie de Ménière, but I do not have any vertigos. He asked for an IRM and laboratory blood tests, which include thyroid profile among others. I had an audiogram done that showed tremendous improvement 9 days after the event. This was all done in a different hospital. This is where I should have went in the first place, but I could not have had an appointment any sooner.

From what I read so far all over the world, doctors are dealing with SSNHL in such an aleatory way (lack of knowledge, specialist, clinic, resource, etc.) While time is playing against us, Why is it that we need to tell 'em what they are suppose to do? I do not know what has worked for me, but I'm glad that I followed JeWel41's advice on getting anti-viral and Nitrams2000's idea to lower my 80 mg/day to 60, though the initial prednisone shock was perhaps a good thing (usually 1 mg/per kg body weight, I weigh 65 kg).

I saw 6 doctors, but I have the firm impression now that you guys know more than they do, without earning the prohibitive salary, meanwhile bearing the pain. THANK YOU KINDLY, I GREATLY APPRECIATE.

As I am only trying to help, I might as well say that I stopped eating meat, dairy products. Quit coffee. Took loads of vitamin C, E. Calcium & magnesium to counteract the loss cause by prednisone. I drank a lot of water and barely ate, if only real basic stuff (fruits,veg, rice). I also walked for long periods of time paying close attention to my breathing, keeping the cold (-25 C) winter air inside as long as possible, thinking I was oxygenating myself. I was able to stay away from work. I went really deep inside myself and saw the grievousness of my affliction; my girlfriend`s death, our kid and my single parenting.

I hope I do not sound too esoteric, as this is really not my type. I sure don't want to brag about this sudden healing, because this is not one. This dreadful experience has taken place within my body, and it might come back as soon as the prednisone is over with. I thought that I owed you guys some recognition, I am so thankful.

I read my previous posts, I was so stoned on prednisone, please apologize me for the ridiculous lyricism, I have a hard time at reading this now.

I really wish we could all meet because there is so much I would like to give you in return.

Merci de tout coeur,

ab

deaf musician

im so glad to hear you are doing well. you are the 4th person on this board to get their hearing back, that i know of. i pray it comes all back to you and you aere ok. let me know if theres anything we can do to help. please write again. the board needs the support. there are so many thata re not as lucky as us. :( i pray for us all

Thanks Hope01, yes I am definately looking at a 30 day trial and they do seem up with the technology here so I will mention your one and see how I go, I am looking forward to it.

Well deaf Musician, what a miracle that is fantastic, was wondering how you were going, It sounds like the blast of Prednisone probably helped and so early on too.
It is definately a mind altering experience, from the Metaphysical, spiritual and physical side of things it make you stop in your tracks and reacess your life, how lucky some of us are. I am grateful too for what this Board gave me and for the small miracle I have.
God Bless.

Hi Rosetta, I didn't even know about this hospital, when I asked my ENT of any specialists he said there were none! Were you seen on NHS? I will contact the hospital myself anyway. I seem to differ from others in that I had mild hearing problems with this ear for at least 4 years and two bouts of BPV - yet my doctors do not link this to the current loss. I have moderate loss and last audiogram showed tiny improvement but my tinnitus is still roaring, I can't tell the direction of sounds, everything is muffled in that ear and I still have the fullness most of the time. I am getting used to the distortions though. But also I have no energy and I have earache and headache constantly even on painkillers as well as strange sensations across my cheek and nose. Hopefully they can help me. Did you have an MRI and if so was it Gadolinium enhanced?

Dear deaf musician, I am so glad to read about your recovery.
That is wonderful, thanks heaven you persisted and insisted of seeing different doctors and having followed the advice of Nitrams2000.
I am so glad for you, because it is too sad when somebody your tender age, ends up with a deaf ear.
Wow your English while always speaking French is fantastic.
Please excuse that I have to run, I am going to pick up my Son at his house and bring him to the hospital for kidneys stones removal.
Technology is great these days, when I had years ago kidney stones I ended up in the hospital for 10 days and could not drive for a few weeks after that. I will be able to bring him back home this afternoon.
Thanks for letting us know about your recovery.
Bonne chance and stay in touch

JwWeL41, I am also in the London area and lost my hearing in my right ear in December 2005. Similar story to everybody else, my GP completely ignored my hearing loss and said it would come back. Took nearly 3 weeks to see a specialist privately (!) and by then was told it wouldn't come back. I've had two MRI now and both times were negative. While visiting family in the States, I saw a specialist there who gave a steriod injection in my ear. Saw a small improvement. I also saw an ENT specialist in London at St Mary's Paddington early last year and he wanted to place a shunt in my ear so I could administer steriods that way but found out I was pregnant and couldn't have the procedure done. I have another appt with him on the 1st of February as I had my baby and looking to see if any treatment can still be done - but assume nothing can be done since it's been awhile since I lost my hearing.

I haven't heard of the hospital that Rosetta mentioned either. What kind of treatment are they giving you Rosetta?

I know the sooner you are seen the better your chance of recovery. Any hope for me?

coulld it be that simple... when i got off the cruise is when i got the swaying feeling... i found this article. read this. i think i just found out i can cruise anymore. :(

Welcome to the MdDS Balance Disorder Foundation site!

Have you recently returned from an ocean cruise and feel like you are still on the boat?

Maybe you've recently been on a plane, train or lengthy car ride and it feels just like you are on a ship at sea, rocking to and fro 24 hours a day.

You may be suffering from Mal de Debarquement Syndrome (MdDS), a rare and misunderstood balance disorder. While MdDS most commonly follows a cruise or other type of water travel, reports of MdDS symptoms have been described following air travel, train travel and other motion experiences. Occasionally, it has been reported following frequent elevator use or sleeping on a waterbed and can even be brought on spontaneously.

Symptoms usually include persistent sensations of rocking, swaying and/or bobbing and can be accompanied by imbalance. For a more complete listing of symptoms, refer to the Symptoms link on this site or one of the articles written about this malady. Articles about MdDS can be accessed through the Articles link and related topics accessed through the Related Links.

Symptoms of rocking and imbalance are often experienced following a cruise and usually last for a few hours or days. This is more commonly referred to as 'landsickness.' Mal de Debarquement Syndrome refers to symptoms which last over one month and often for years. It is this form that this site and the MdDS Balance Disorder Foundation focuses on.

We at the MdDS Balance Disorder Foundation hope this site helps you learn more about Mal de Debarquement Syndrome.

Disclaimer: Information found on this site should not be construed as expert medical advice. You should always consult your physician before starting any course of treatment. Information found on this site is a compilation of information from a variety of sources. Please refer to the References section of this site for a listing of these sources.

http://www.nhffoundations.net/synapse/homepage/view_public.c....

deaf musician

I have been away for 8 days on a cruise and just now tapped into my e-mail stack. I am pleased to see that the urgency advocated by several of the forum participants was heeded by you.

I agree with nitrams2000 that those of us who have recovery probably owe it to Prednisone treatment. I rather doubt that you would lose your hearing after the Prednisone wears off. I would seriously review as much literature as you can find (here and elsewhere on the web)to figure out what you can do for yourself to mitigate any further occurrences. In my case, the time lapse between SSNHL was 14 months.

I have made changes to a number of things (diet, supplements, stress reduction routines, physical work outs, etc). One that I find hard to give up is listening to live music. On this cruise (Legendary Rythym & Blues Cruise) there was 24/7 music, very loud at times and I wore ear plugs as a caution, not knowing what role very loud music might have played in the past.

nitrams-I have no adverse effects from this cruise. Interesting stuff you shared though. I have only cursorily 'cruised' the forum entries since I left and will review in more depth when I return to Seattle on Monday. Am writing this from a hotel business center in Miami.

Nitrams 2000

Interesting stuff, I get that feeling when going up and down elevators, so wondering if thats what causes mine.
Many years ago when I flew from NZ to London I had touble also with a feeling as though I was falling backwards all the time, lasted for about 2 weeks.

On Occassion and very rarely I can be walking along and the ground feels like its coming up to meet me, but no dizziness or fainting feelings.
I will read the link you have given see if theres a common ground there.
Very informative thanks.

Seattlestan,

Thank you for your fellow-feeling.

Today was my last Prednisone dose (10mg). I have completely recover my hearing acuteness (from what I think), and the tinnitus is more and more dying away.

Getting help and support on this forum was one of the key element at the time of this hearing loss. I feel really bad knowing that you are the 'cobaye' while I benefit from your appraisement. I feel even worst thinking that some of you have lost their hearing ability...

So, please understand that as I'm writing down these words I do not undertake to say that you saved my life.

THANK YOU FOR YOUR GOODWILL.

Merci beaucoup,

Alain

Deaf Musician - I am so pleased that you have your hearing back. You are a very lucky man!I hope you never experience this trauma again and as I understand it, it is very rare to have a recurrence. Good luck with your music!

Deaf Musician - I am back home - was away for the weekend. Just checked this forum and want to reiterate that I am so glad that you are OK again with your hearing and not much Tinnitus.
I want to thank Nitrams2000 as he was the one that gave you some advice on how to deal with these doctors.
I am glad to know that this forum is here to help people, I wish I had found it last January (today is the anniversary of my onset of sudden deafness), because if I had known what I know now 'grace' to this forum, I might have recovered my hearing. Instead I listened obediently to these ENTs, and did not confront them when they said no more than 6 days of Prednisone......
In any case I am so glad that some of you are OK again.
Take care

Dopes anyone know anything about a Warthins Tumour? This is a tumour in the parotid gland (below and in front of ear). My gland has been lumpy and swollen since onset of deafness on deaf side only, GP, ENTs not concerned 'just a swollen gland'. But when I googled this I found only one site with symptoms, one of which was 'ear symptoms - tinnitus, deafness, earache'. As you know I have the other symptoms of face pain, odd sensations across my face. This is a long shot but if I could find more detailed information at least i could discount it or go to my GP armed with it! Thanks

To all and especially Nitrams2000
- first of all I have once more after weeks of decent sleep one of these Tinnitus events this night. My deaf ear which gave me only very low key Tinnitus, gives me again tonight a waterfall with ringing noise and it is unbearable just like the day I lost the hearing a year and 2 days ago. It is driving me crazy and scares me for my other ear which does some abnormal poppings right now.
- secondly, did any of you see tonight on ABC primetime medical mysteries? There was a segment on 'Mal de Debarquement' what you Nitrams2000 told us on this forum.
Supposedly, The Mass Eye and Ear Infirmary clinic where I go in Boston have deviced some sort of platform where they actually can measure the vibrations and wierd movements that the brain is making for the people suffering from that affliction. Two women were part of the show, one got this after a cruise the other after a plane flight.
Mass Eye and Ear under Harvard School of Medecine has also come up with some kind of vest that lets the sufferers feel normal again. But they say it is truly very expensive right now.
Maybe some of you saw this segment of this show?
Thanks Nitrams2000 for your dilligent research and sharing it with the board.
Take care
P.S. Please pay no attention to my spelling mistakes it is late, and I took a Klonopin to ease the feeling of this trerrible Tinnitus and hopefully let me go back to lay down and fall asleep.

Hi everyone. I'm a 23 yr old recent college graduate, and I suddenly lost my hearing about a month and a half ago. I was very sick with a flu and a kidney infection at the time, when my hearing suddenly disappeared as well. With everything else that was wrong at the time, the hearing loss seemed less urgent, so it was a month before I got to see an ENT doctor. He put me on 50 mg prednisone for 6 days, but that ended a week ago and my hearing has not yet returned at all.

This is the first place I've found online where it seems that people understand what this thing that's happened to me is. I am heartbroken that I didn't know to see a doctor earlier--my family and I kept thinking it'd come back...the ER doctor told me to take sudafed in case it was just congestion or that I might have water in my ear--and missed that immediate window of opportunity.

I'm getting used to life with only one ear that hears...occasionally I feel off balance, and I have what I guess is tinnitus in my dead ear, which I am getting used to as well, though at times the volume increases dramatically and takes several seconds to a minute to drop again. I'm just struggling with being so young and having lost my hearing so suddenly. I just went back for a checkup with the ENT and he basically said to give it time--to hope it comes back. I had an MRI--no tumor or anything--so I've just been praying, with no idea what else to do.

I saw that some of you have mentioned that you take herbal supplements---what ones do you use, and what effects have you found them to have? At this point, I will try anything.

Thank you to all of you for just having this forum up for people like me who don't know what to do to find and come to for help and support.

Hi Ulricha1, sorry that you have joined our exclusive club. How much hearing loss do you have? Suppose you have had blood tests etc? Has it settled a bit since the offset in terms of distortion etc? If not, you will find that it will. My distortion has so improved in the past two days that i had convinced myself my hearing was coming back and I rushed to get an audiogram today only to be told - no change! You should also consider a hearing aid.You may already have thought of this but what medications were you taking for kidney infection etc, sadly this could have been the trigger. Lots on this site swear by the ear shots, you can't get them in the UK but why not ask your ENT. Loads of luck and keep us posted.

To all - great website worth a look:-

www.hear-it.org

I've got basically 100% loss--a 'dead ear', my ENT called it. I was very off-balance at first, but I'm pretty much fine with that now. Once in a while I feel a little off-balance but it's nothing like it was before. I was on Cipro for the infection, which is pretty new for antibiotics, so that or the virus might be to blame.

I'll check into the shots---my ENT never mentioned them, so I'll have to see if that's even an option around here. Maybe at the Cleveland Clinic--within driving distance of me.

Ulricha1
I am so sorry to hear your story it is so similar to mine. 100% deaf in the right ear now since a year and 3 days. The only thing is that I am much much older than you. How sad when this happens to a very young woman or a young man.
Please, Please insist on getting the shots in the ear.
Here in the Boston area, the famous doctors at Mass Eye and Ear do not believe in the shots, they say it is probably spontaneous recovery. But why not try it; if you have been reading many of the posts written by people not in New England, they got their hearing back. I do believe in the shots into the ear, I am not a doctor, but I am mad as h... that I did not have the opportunity to get the shots.
Good luck to you, and please insist on getting these shots.