Sudden Hearing loss _{Page 3 of 105}

tinnitus treatments from personal experience: (mine gets bad as well whenever i have a cold or sinus infection)

I have a hearing aid which masks the tinnitus during the day and helps quite a bit. I take the hearing aid out at night as it amplifies too much sound. At night I find white noise helps (ie humming of fridge) and other tape sounds of harmonious noises I leave on

The hardest thing is when I am experienceing a lot of stress, the noise either seems to be louder or maybe I just am more atuned to annoyances

i have heard a salty diet can aggarvate tinnitus. I like you try my best to avoid sinusitis attacks and am taking a lot of vitamin c,e,a, (anti viral) garlic and vinegar this flu season to avoid as best as possible.

I missed out on repsonding to a Stanford research study on sinusitis so there maybe some studies sponsored by the more research oriented hospitals that you could check
Good luck, I know its an annoying problem
Michael

Elischee, the steroid isn't that bad for the baby. I was 4 months pregnant when i got SHL and i took the steroids, the baby turned out fine (knocking on the wood :) ), he is 6 weeks old now. Your ENT should contact your OB and i am sure they'd approve it, the only question is the dosage. I know another lady who is 6 months pregnant and she took the oral steroids as well as steroid shot. Go for it, i believe it is the most effective way. It didn't help me but it is very individual. Good luck!

I agree with kslm23; personally I think it was the steriods that brought be back to where I have approx 20-25% of my hearing.

I did not get my first shot until approx 3 weeks after I lost my hearing..but the sooner the better if you do get it the steriods

kslm23; have you gotten any hearing back, glad to hear your baby is well

Michael

Thank you Michael!
Unfortunately i didn't get any of my hearing back but my oral steroid dosage wasn't high and i couldn't find anyone to do the steroid shots. I did this procedure instead http://www.silversteininstitute.com/microwick.html It seemed to have a similar action to the shot but didn't work for me.
polina

sorry to hear that Polina; keep the faith
Michael

kslm23 and Michael,
Thanks to both of you. Kslm23, I am really glad to hear your baby is good, that give me a lot of hope.

I went to UCSF on Tues Nov, 22nd, 12 days since onset, Dr. Lustig saw me and give me the first ear shot,(thanks Michael, I got his name from your post,since I live in Santa Clara, I went directly to UCSF and find him.)
I did check with my OB, she said steroid use on Pregnant woman was not recommanded but it has been used throughout the history, the negative effect on fetus is inconclusive, may be or may be not, in my case, she said I should go for it.
Dr. Lustig think ear injection should have no effect or very very minor effect on fetus, b/c the dosage is much lower than oral, he did not put me on oral steriod at this time.
My understanding from him is that the steroid may or maynot work on me, I have 88% hearing loss, he said he had seen steroid works most effectively on 50% or 40% or less hearing loss cases, mine loss is on the server side, may or may not work, I am going to get the second shot on the 29th.
Now, two day after the first shot, I did not feel any difference, even though Dr. Lustig told me the steroid will make the ringing in my ear better, but I don't really feel it. Hope it get better later.
I am also start my accupuncture treatment since Monday 21st. Dr. Lustig said I can keep trying accupuncture at the same time.
The guy that give me accupuncture claim that he has been succssfully treated two patient with SHL in the past, one guy get 70% of his hearing back after seeing him for serveral month, the guy went to see him after 6 month of onset. What he did for me is putting needles in my pressure point, two on hands, each side one, one on my left leg, one on my right foot, one behind my left ear, three or four behind my right(bad) ear, to increase circlation of blood and oxygn to my right ear, hope that will booth my immue system to recovey.

I will keep update as it go along.

Keep the faith and prayers for all of us.

Elischee

Elischee, glad to hear you got the shot. Good luck!

i had almost 100% hearing loss and I think it was 2 1/2 weeks before I first say Dr Lustig and then it was I believe after the second shot that the hearing started to improve..its funny now but
the day I got some hearing
back I did not realize it at
first but everything semed really loud all at once

i think thats fantastic about the accupuncture

don't lose faith, My thoughts and prayers will be with you and your family. I know its
very tough the first month or two.

I have a hearing aid now which helps quite a bit.

The tinnitus can be botehrsome but like i mentioned on earlier post...
you have to play a psychological game with the noise otherwise it can be very depressing and claustrophobic as you cannot excape it. I find white noise at night (fridge or some tapes and then my hearing aid helps mask the ringing during the day). I actually think this is the best benefit of the hearing aid

Good luck...lustig is the best
we are both lucky to have him available

Michael

Hi! I lost my hearing in my right ear about 3.5 weeks ago. I just woke up in the morning and my ear was ringing and I was very dizzy. I went to the doctor that day but he told me it would go away on it’s own. I went to see a different doctor the next day, as I felt I had been fobbed off, and he just told me that my ears needed to “pop” and that it would eventually go away. Not happy with these answers I went to see an ENT specialist and had hearing tests only to be told that my hearing was nearly all gone in the right ear and that it probably wouldn’t come back. The ENT specialist said that I probably had a benign tumor on a nerve or a blockage that has caused the hearing loss. Of course at this point, I’m thinking the absolute worst – like it’s cancer, or something fatal, never mind the hearing loss. The ENT doc put me on a 7 day course of steroids but still no change. I had an MRI yesterday and now it’s the waiting game to hear the results.

Before the hearing loss, I’ve been absolutely healthy! I’ve been searching the internet for information and this site has been wonderful!!! I’ve been thinking about acupuncture but not sure if it would work or not. I’ve also been taking anti-depressants for about 5 months and I found some information that they are an ototoxic drug that can possibly cause hearing loss. So, I’m going to gradually get off those and see if that makes any difference.

Agree with all of you that the docs don’t really seem to hold out much hope – or give you much advice. When I asked about hearing aids, he said that they wouldn’t work as the hearing loss is within the inner ear. How about cochlea implants? Has anybody had experience with that?

Thank you for all your stories and giving a bit of hope and encouragement!

I would STRONGLY recomemnd you try to find an ENT specialist who can do the steriods shot directly to the inner ear

Try a university hopsital
where are you located?


if you need to search on Dr Lustig at John Hopkins...he has been doing it for almost 10 years I believe and it seems to be one of the few things that can work..My believe is it works in the cases where a virus has caused the hearing loss which
again personally I think happens in 80% of the cases

YOUR Ent is correct in that a hearing aid will only help if you have some hearing capacity in the inner ear. If you have basically no hearing then a hearing aid will not help

Cochlear implants can be done and have some risk (??0.1% of people die become very ill from meningitis infections in the brain
However my understanding is that the bigger day to day issue or problem is that most health care coverages will only do a cochlear implant if you have no hearing/have lost your hearing in both ears, as its quite costly and the health care industry fugures that if you have hearing in one ear thats enough to live.

Keep the faith

Michael

its ridiculous that your ENT would tell you that its probably a benign tumour
From what I understand the most likely causes of this loss are
A) viral
B) immune reaction of some sort (ie your anti depressants)
C) circulatory problems in the inner ear (they call it a stroke of the inner ear in some articles)
D) membrane tear (perilymph fistulae)from diving or very loud noises..so something that causes a physical deterioration
E) in very very very rare cases its a tumour (my dopey ENT said 1%)
Hope that helps
Good luck
E)

I'm in the UK but am going back to the States to visit family at Christmas and will try to get a second opinion there. I'm very interested in finding out more about this steriod shot - and if they can do this here. (Getting anybody to do anything over here is like pulling teeth!) I did tell the ENT specialist that I was antidepressants but didn't seem interested or that it was important. Even mentioned it to my GP and he seemed surprised! I finished taking my 1st course of steriod tablets today (only for 7 days) and see no difference. It looks like people have had to take several courses before a difference is seen. Has your hearing returned then? If so, how long did it take?

your right, we as patients have to be the advocates in this malady as the basic ENTS are useless, misinformed and like most drs who are misnformed are in denial as to their ignorance

My hearing came back approx
25% after what i can only attribute to either chance occurrence OR due to the 2-3 steriod shots (to the inner ear I had)

Michael

I have a follow up appointment with my ENT tomorrow- two months now since originally hearing loss. I had two steroid shots into my inner ear drum- as well as a full course of steriods which were not that easy to take (side effects) but my hearing has returned - I will find out tomorrow to what % but I feel confident that the treatment they gave me was responsible. The only thing I have a residue ringing sensation now and again, usually at night before I go to sleep I hear it - and I have a hole in my eardrum left from the shots which has still not healed. I feel like air comes out through my ears if I sneeze or blow my nose but I can live with that. The other thing I started immediately in LARGE doseage was liquid vitamin E capsules and three times a day I drank a green drink called Phion PH Balance Alkalive Green. I dont know but I feel the drink helped re-oxygenate my body. I smoke (socially) and my skin was getting really bad probably from the loss of oxygen from smoking and after drinking this drink- everythign improved- my husband even started drinking it now- I feel the vitamins and greens really helped in combination with the treatment given by my ENT. I did this on my own after reading a study on line about it. Anyone who gets this hearing loss should NOT sit around and wait- go immediately to a specialist and begin treatment. The faster you start the treatment the better your chances. My ENT was very aggressive- and that made such a difference. Good luck to all of you- having this forum helped me so much to cope with this experience.

Praise the lord and pass the butter. You are right on Damagato.

FYI the hole in the ear does heal up, mine took about 2 months after the final steriod shot...they (the specialists do not tell you that they try to use the same hole each shot, which makes sense, (BUT prolongs the ear drum healing) however it would be nice if they SHARED these minor operational insights.(heavy on the sarcasm here)

The hole does cause extra tinnitus as you are right, its like everything vibrates inside the perforated eardrum.

My hole even ended up being infected which the dopey ent couldn't spot, but thank god my regular GP did...


so the moral of the story is we are on our own and the sad reality is the ENT medical profession does not have a clue how to deal with this hearing loss problem as the malady is not understood


The GOOD news is that research in the hair cell regeneration arena says that in maybe 5-7 years they will be able to have this problem
resolved. ALSO They (research) have identified (I believe) a protein that is either absent or present in many people with hearing loss. So very shortly they could start to treat this (for these particular people
who show an absence or presence of this protein in the inner ear)

take care all
Michael

There is a research study on this latter matter in Virginia I believe if anyone is in that area

Do the steriod shots to the ear hurt? It sounds like it would be painful! But willing to take the chance if it's going to bring back my hearing if only a little bit. Micklog, are you able to use a hearing aid then with the 25% improvement to your hearing loss? Dreading to see the UK doctor here next week as they seem to take the "high and mighty" approach and think that you (the patient) know nothing. But I will take all this information that I have gotten from this forum and see what we can do. Off to the health store today to see if I can find some of the stuff Damagato suggested. Thank you all! It's nice to be able to chat to others who are experiencing this condition. I don't feel so alone!!

steriod is painful but unfortunately worth it; I compare it to a bee sting on your brain...not trying to freak you out but it does hurt a little but the pain only lasts 10-30 seconds

Yes hearing aid can be used once you have a base level of "some" hearing capacity in your inner ear. Its not perefect with the hearing aid
but the aid helps...I am fortunate to be able to afford one of the higher end ones (I think it was $1250)
called a diva...its digital
(? or analog..cannot remember) and they can perform a computer modelling
on it that tailors the heraing aid to "hear" the particular frequencies that you are deficient in.

THE BIG benefit that I personally find with the hearing aid is that it
picks up a small level of external noise (ie static on the radio, a co worker rustling paper or drumming on their desk with their fingers) AND this external noise lessens the tinnitus (ringing in the ear).

Again in my personal case, now that i have some hearing back the ringing in my ear is more debilitating than the hearing loss. From what I have read, this seems to be a fairly normal reaction on my part (ie it can get depressing)

So my concern in your case is that If you do come down with tinnitus, you should try to find something that pyschologically) helps with this ringing... That is there is nothing that I have been able to find that will actually cure or physically diminish the ringing in your ears. Thus what you have to do is use the mind over matter approach, ie I really do not hear that freaking ringing in my ear. ANd the best way to play this game with yourself is to mask the true ringing in your ear with other things that allow actual "white noise" such as a refridgerator at night or your hearing aid during the day to magnify the external noise and thereby overcome or mask the actual ringing in your ear.

From what I have read, this along with biofeedback can be the most psychologically effective way of dealing with tinnitus is the most effective way of dealing with it

Unfortunately there is no elixir that I know of that eliminates the ringing. Some of the articles say (and i believe this) that there are certain foods (salt, liquor, spices) that can for whatever reason increase the tinnitus and if you get a cold or sinus infection, it also seems to worsen as these infections seem to affect the inner ear workings. Alcohol (along with spicy food), I guess also affects your circulatory, brain and blood flow which in turn also can aggravate your ringing.

Also i think that tinnitus is a personal thing based upon individual body chemistry, in that one thing
(food or herd) may help you but do nothing for the other 99% of us

sorry for rambling
Good luck and you are right in that this site does give you some peace of mind knowing that there are otehrs out there like us who have and are experiencing the trauma of what you are going through

Michael

Keep positive

update: I had second shot on Nov 29th from UCSF. Prior to this shot, my hearing felt a little better, could not really tell, mybe I am just getting use to only hear well in one ear. It seems to me that I can hear some high pitched sound if I cover up my good ear.
Anyway, Dr. Lustig told me I should start notice some graduate improvment after the second shot.
I still doing accupuncture treatment once a day, my accupuncture guy told me if I am not pregnant, he would give me two treatment each day. I definitely think it helps, each time after the needles out, I feel the ringing in my ear gets better for a few hours, then the ringing come back up again, it is still too early to tell.
My next shot is in Dec 13th.
I will keep update.

Good luck to all of us - this forum helped me so much.

Just wanted to update you all too. Talked to my ENT doc on Friday night and the MRI was fine - but somehow I already knew that since I've talked to people on this site. He did mention that I may have a small cyst that should be watched (another MRI in 6 months time) but wasn't overly concerned about it. I have another appointment with him this Friday and will have another hearing test. I asked him if I should take another course of steriods - but he said no. Also asked him about the steriod injections and apparently they don't do that here. So I'll have this appointment on Friday and see what happens. Then I'll probably go and see another ENT doc when I go to the States next weeek.

Will look into the accupuncture too - maybe while in the States and when I come back to the UK.

kslm23,

How is your baby, I wish him the best.

Do you know how much dosage of steroid you took? How long did you take it?

I am still quiet worried about my baby, I just had a visit to my OB, she told me repeat use of steroid could stall fetus development, even though the effect is inconclusive.

I am wandering weather I should get the third shot or not, my hearing did improve a little bit after the second shot, even though it was shot in the ear, 90% of the steorid get swallowed.

Kindly let me know. I have another tough decision to make. Thanks in advance.

Elischee

Elischee,
the baby is doing fine, thank you. I am surprised that your OB is so against it. Several Obs told me that it was OK in a case like this. I read a lot on the internet, they were talking about a possible palate (? problem with the lip) risk but it forms sometime in the first trimester. I even had the MRI done. I believe they even treat some pregnant women with the steroids to develop baby's lungs faster (may be in case of danger of miscarriage). Who told you that 90% of the steroid would get swallowed? My ENT told me that around 5-10% may possibly be swallowed. You are in the 3rd semester, your baby's organs are all formed, she is just growing now, i don't believe there could be a big harm. Like i mentioned, i was only 18 weeks pregnant. The way i decided was this - i decided to check the hearing and if it showed that i had enough for hearing aid, i'd not do the treatment, otherwise i would. I had 100% lost after oral steroids, so i did the treatment. But it didn't help. Good luck!

Kslm23,

Thanks for your reply and information. I appreciated it very very much.

I just returned from my appointment at UCSF today.
I decided not to have the third steriod shot to my ear.

Dr. Lustig, the head of ENT at UCSF told me my hearing improved quit a bit, low freq and high freq almost back to normal, mid freq recover about 30 to 40%, I can definitely benefit from hearing aid now, like you suggested, I have the same thinking, since I can use hearing aid now, I choose not to do the third shot.

He also told me the steriods shot is highly concertrated, each shot is about 6ml, equal to 1/3 of regular oral steroid pill the normal SHL patient would took a day( I believe the normal does of oral steriod is 60mg/day for 4 weeks)

When I have the first ear shot, after the steriods was injected, he ask me to tilt my head and lie down for 30 minutes without swallowing, I was not prepared for it and did accidently swallowed one or twice, the second time I mentioned to him that I swallowed some during the first shot, it is at that time Dr. Lustig told me 90% did end up being swallowed, hopefully the other 10% remain in the ear and do the job. That is why I got scared by the 90%.
I remember you have a different procedure than the ear shot, maybe less gets swallowed.

I also read from the web regarding some treatment that use steriod to help develop premature baby's lung in case of miscarriage, data has shown no harm to baby with one shot, but animal testing show that multiple shots did have bad effect, but not many cases of human miscarriage get multiple shots, also the shot was directly to the placenta. The harm of more than one shot of steriod to the baby is still a big question mark.

My ear drum feels funny and hearing test show that it does not move as the normal one, but Dr. Lustig seems not too concerned about it, he said we can neglect the ear drum effect on my hearing test at this point, the mid freq loss is still largely hearing nerve problem.

I am continues with my accupuncture treatment every day, it seems to me I feel a little bit better each time after each treatment, but it is hard to tell without a professional hearing test. Dr. Lustig seems quit impressed by my hearing improvement, maybe the accupuncture did helped, along with the steroid. (I did call up a lot of accupuncture doctor and ask them about weather they have treated SHL, most of them did not even know about it, lucky the doctor I am seeing now seems to know what he was doing).

To all the deaf web friends, check out the doctor before you waste any precious time on any of the morons ENTs, SHL is a medical emergency, the sooner the treatment starts, the better chance of recovery, accupuncture said the same thing. I wish I did not listen to my first ENT and waited the first week of my time.

Hopefully the rest of my hearing will come back some day. I will keep seeking treatment now and after the baby is born until then.

Best of luck to all of us out there.

Elischee

congrats; thats fantastic that you have recovered some hearing
tjhe hearing aid i have is called a diva and i think its great, the people at ucsf alos indicated that it was very good...they can tailor the hearing aid to the frequencies that youa re deficient in.
good luck with your further recovery and best wishes for your baby

It is so important to not listen to the morons which unfortunately most ent's are
and do as much research as you can

good health to you
Michael

Elischee, congratulations! This is great!
Was your original hearing loss 100% ?

Hi there

I've been reading these posts with utter fascination - and have to say I agree completely with those opinions of ENT specialists on this subject!

I've dealt with them since I was five and only as I mature have I been able to ask them about my ears and thus discovered nothing is as bad as I thought it was. Nice if I'd been properly explained to in the beginning. Also good if ENT's were honest about the gaps in their expertise and knowledge.

Congratulations to Elischee.

Can I just say to the others on this post that i had sudden hearing loss in my left ear at 17 years (I'm 33 now). My hearing in that ear has gone up and down - ultimately in the last ten years its improved from moderate to severe hearing loss in that ear - to moderate/mild. Its very peculiar, apparently its still sensory neural loss - which by definition means it 'shouldn't' come back. Anyway, that might give hope to some of you. Eventually you adjust to hearing with one good ear anyway.

I do believe that ear research and surgery is just so new (about the last 50 years or so) so I have stopped taking as gospel, the definitions and prognosis given by ENT specialists. Who knows what we'll find out about ears in the future.

Anything to do with ears affects us in a highly personal and unusual way. Nobody can see it and if you don't have it, you can't understand the relationship you have to the noises in your head or what the slightest change in their health means to you.

Be great if we could start up an online support group away from this site. It is after all about homeopathy!

Take care everyone, best wishes to all.

Sez

I think thats a great idea to start another special forum devoted to hearing loss, I am not big on having it revolve around homeopathy though as

A) I will admit i do not understand exactly the basis for homeopathy, some of the suggestions on here (herb of this sprinkle of this, black root of licorice...??? remind me of Dr Bombay from bewitched,...i am dating myself in saying this)
Also, I think we have to tap into what exists in the ENT specialist medical profession
that the right hand (the Dr Lustigs) are not getting across to teh left hand (the basic moronic ENT dr's) who the general consensus on this site seems to be in agreeement are criminally incompetent

B) in relation to SHL, from what i have read as a layperson, my guess would be that most cases are related to viral, auto-immune, auto-toxic, stroke in the ear like syndrome,hearing drum bursting....(all of which require some form of medical
intervention) ,,,,ie herbs and potions may not work

In the case of viral and a recent protein discovery that they have recently found lacking or present in those with hearing loss, i think the focus should be on bringing to light what we as SHL people have heard/read might work such as
A) steriod shots
B) anti viral treatment
C) vitamins (anti viral)
D_ acupuncture and crainial sacral
E) hyperbaric oxygen pressure
F) herbs
G) homeopathy

I am not trying to be negative on homeopathy, but i think its solution to most causes of SHL are limited (again please see my first statement in that i am ignorant as to what exactly homeopathy is)

Thanks Michael