Tinnitus Support Group

Tinnitus, "ringing ears" or ear noise, is a phenomenon of the nervous system connected to the ear, characterised by perception of a ringing, beating or roaring sound with no external source. Tinnitus can be objective (perceived by a clinician) or subjective (perceived only by the patient).

1 Online
1 Online

NERVE DAMAGE

Is what i was told by the ENT i saw Monday.He said that there is NO CURE for Tinnitus if there was they would be out of bussiness.He said that i was to a point that an ENT could not help me that i need to go a step up and see a Neurotologist. so I asked if inflamtion would be affecting my ear and making the tones go up.He said there is no way they can physical see if there is inflamiton that bascially the systoms the patient has is what gives them the somewhat ability to know what the problem is. I would like to add that the hearing test made my bad ear worse. Does anyone have nerve damage and if so do you know if there is a cure?

Replies

DarkSON
DarkSON

I suffer from nerve damage or a neuropathy. I have my belief that my tinnitus and tinnitus in general is caused by nerve damage. There is no cure for nerve damage that I know of. I am getting relief from MrT with 5-HTP and a Super B vitamin. Because of my neuropathy sometimes I have to knock myself out at night with codiene. I have found that meditation helps a great deal as well as just keeping busy. I know that my brother(oldest one) has had tinnitus for a very long time. I dont believe his is as loud as mine. I am into my second year with it.
deleted_user
deleted_user

Hi Ledli, interesting. Thanks for posting the info and update on your condition.

I don't understand what kind of nerve damage you mean, though. Nerve damage requires some kind of cause.

What nerve(s) have you damaged and what damaged them?

Or did the ENT just say "uh.. nerve damage is the cause" and that was it?
deleted_user
deleted_user

What type of nerve damage and neuropathy do you have, Pat?
DarkSON
DarkSON

Somewhere around the year 2000 I got really ill and my body started to shut down. Unfortunately in Eugene, Or the doctors her really stink and couldnt tell me what I had. I ended up pretty much bedridden for 3 months. We thought it might be MS but the doctors thought it was guillan barre like(not ms). I had all the tests but nothing. Finally I started to get better, But the illness had eaten the lining off of my nerves. Things would go numb for no reason what so ever at one point completely lost use of my left pinky(which doesnt help when you play guitar). Everytime I would see a neurologist they would run the expensive tests and tell me yep you have a neuropathy, but theres nothing we can do, cept bill you and offer you drugs.Now most nights when I lay down to sleep my left arm will begin to hurt and the longer I lay down the more it hurts till I get up for awhile. If I want to go right to sleep I need to tale the codiene. Its my wifes codiene(from an old prescription) and I only take a small amount(1/4 of a pill) but I am down to my last dose and dont know what I will do to get more.

Pat
Seattleite
Seattleite

Ledliyl, this post is long winded but please read it to the end as if may help. I was told by my ENT that I have nerve damage but he didnt go into detail. He told me it takes a long time to heal which I know to be true due to nerve damage I experienced to my left hand. He also told me that even though it may heal, it will never be the same again. To be honest, until the medical geniuses find a cure, your ENT may be correct in that theres nothing he can do. They typically say something to the effect of go home and live with it; thats what mine said. Although I know my tinnitus will never go away (unless somebody finds a cure), I do maintain the hope of helping it quiet down a bit.

For me personally, I say personally because were all different, I try to stay off prescription meds and go natural as much as possible. Although I have no hopes of the nerve damage being completely cured, I do have the hope of it healing to a point where the sound is more tolerable and easier to habituate to. So in search of something to help my body heal the nerve damage, below is what Ive tried that hasnt worked and what Im currently trying that seems to be working:

What has not worked for me:

T-Gone (snake oil) in my worst moments --
didnt help.
All the vitamins that are supposed to
help -- didnt help.
A lot of the herbal supplements that are
supposed to help didnt help.
Cutting back on caffeine, salt, etc.
didnt help.
Acupuncture I was told by the
acupuncturist if I didnt notice a
difference within 6 treatments it probably
wouldnt work. Although it didnt help
with the tinnitus, it did help me to relax
which is very important when trying to
cope with it. After 6 treatments (2 per
week) the noise was as loud as ever so I
stopped. In conjunction with the
treatment, the acupuncturist also included
her own herbal concoction which I felt
just made my tinnitus worse.

What is/has worked:

Education about the affliction. Knowing
what Tinnitus is and advice on how to cope
has helped me deal with it better.
Daily Strength, RNID and other tinnitus
forums have help immensely by reading the
experience of others and following their
advice.
By the end of the day, I would be
exhausted from struggling to keep both my
emotions and anxiety under control. St.
Johns Wort helped immensely for that.
For some, Ive heard the 5-HTP supplement
works where St. Johns Wort does not.

What seems to be working today:

Vitamins are touted over and over again to help with tinnitus. The problem is the body is only able to absorb a small amount of whats taken in pill form. I stopped taking St. Johns Wort, packed up all my vitamins/supplements, etc. and started taking Spirulina and Chlorella which is classified as a superfood micro-algae. Its known for its many benefits which include helping to rebuild nerve tissue. Since its a natural source of vitamins, protein and much more, the body is able to absorb the nutrients more efficiently and in greater amounts. The jurys still out as Ive only been taking it for about two weeks now, but so far Im pretty sure it has helped with both my hyperacusis and the loudness of my T. For the first time since last August, Ive had 7+ days of less sound and am finally better able to cope with noise. I believe the pitch has dropped some as well but I cant verify that. I take the recommended maintenance, a 2:1 ratio of Spirulina (5 grams twice a day) and Chlorella (2.5 grams twice a day) keeping in mind its a food. It has given me a huge boost in energy and has greatly improved my frame-of-mind which may be a big part of the change Im experiencing which includes finally starting to habituate to my tinnitus. The only side affect Im aware of is it turns your poo green :-). The bottom line is it seems to be helping. Below are two links on these two superfoods:

http://www.chlorellafactor.com/
http://www.spirulinasource.com/index.html

I got the link below off RNID. I thought youd find it helpful if you want to track the pitch of your T:

http://www.audiorelief.co.uk/en/tinnitus_test.html

Tuesday (4/28), I started taking Vinpocetine (recommended dosage of 10mg 3 times a day) as its known to help with both tinnitus and nerve damage. Vinpocetine seems to be close to Ginkgo but I decided to give Vinpocetine a try as the Ginkgo I was taking for about two months was making my tinnitus louder. I know this to be true as the sound dropped within four days after I stopped taking it and it remained lower for more than a few days. Plus, as an added bonus Vinpocetine seems to help with healing nerve damage. I have provided two links on Vinpocetine:

http://www.smart-drugs.com/JamesSouth-vinpocetine.htm
http://stason.org/TULARC/health/body/tinnitus-ringing-ears/9-12-Treating-Tinnitus-vinpocetine-and-vincamine.html


So in the hopes of helping my body heal the nerve damage and quiet down my T a bit Im taking the superfood Spirulina, Chlorella and the supplement Vinpocetine. I dont know about the Vinpocetine yet, but the micro-algae really does seem to be helping. For me anyway.
I hope this helps. God bless.
deleted_user
deleted_user

The "cure" word gets thrown areound a lot. I will love to hear of one, but substantial relief would be just as good to me. I lived with tinnitus for a year and a half and it didnt bother me until january of this yr when I was playing a gig. Yes a cure would be great but it's not at all nessisary, at lease not for me if I can get relief from some basic changes or treatments. My ENT was one of the biggest jack @$$ Ive ever met and was absolutley no help. They must teach them that in "ear" school. lol
attester
attester

I couldn't agree with you more "lowedt". It would be nice to cut through the ?#$% and determine what may offer at least some relief without detrimental side effects.

As for your ENT, you must of had the same one I had. In the 5 minutes that I saw him, he states "You have tinnutus, there is no cure and learn to live with it". I ask him a question or two and he states while looking at his watch, "I don't have time to answer your questions make another appointment".

No additional appointment was made. I'm learning to suffer with it and make the best of it.
deleted_user
deleted_user

Snow I beleive he was referring to the ear apparently he came to that conclusion b/c of my hearing problem.I told him i had all the test done too.He said that the symtoms of the patient is bascially what tells them alot.He said if someone has vertigo,ringing ears,fullness in the ear all those are indicators of meneries.He looked in my ears and said it looked good,but as for the inside they cant see.He said that maybe the neuro will have some kind of technology that could help me.So im hoping that the neuro will at least tell me why does the tone im my ear goes up when i strecth,yawn or when i go to get up from laying down.The valuim supresses it.I hope the neuro can also telll me if the vestibular is okay or what. I see him on the June the 8th and i will post what he says but im not going to say what the ENT said about the nerve damage i want to see what conclusion he comes up with.Whenever i see a different doctor i never tell him what the other thinks or says. b/c they will take that and run with it and you never get anywhere.Sometimes they specialize in one thing but have different training or sometimes that one doc has had a patient with the same thing and knows what to do but some docs have never seen certain things in patients and instead of helping them they just send them home to live with it.

Seattleite I have treid accpunture,herbal,cutting back on salt and caffiene.I have seen diffent ENT,Saw the the TOP specialist he said up your xnax and see a shrink.This last ENT saod see a neuro so while i still have insurnace im going to go

education about the affiction does help alot. I feel that i could take the exam to be a ENT and pass with flying colors.I have done so much research and study the ear. I have read about the spirulina and chlorella.I will probaly give those a try I have nothing to lose and something to gain if it works for me.Thanks for the links
The vinpocetine gave me real bad head pain that tylenol didnt take away and that is that i was taking a lose dose of it wont do that again.The Ginkgo make me have loud roaring cant do that one either.The TRT made my hypercusis worse so did the hearing test i had done.thanks for the information.

Darkson the 5-HTP helps you with your T?
deleted_user
deleted_user

Attester I guess i was lucky b/c i had about 6 questions to ask my ENT and he answered them all.He even explained on the ear chart they have in the office.I have been to some other ENT and had a bad experience.I just hope the neuro im going to see is not a ?#$% I hope he has the patient to treat me like a human being and not like cattle in and out.
deleted_user
deleted_user

Pat, sorry to hear that. There is worse but neuropathy can be especially frustrating. Almost as frustrating as your body shutting down leaving you in bed for 3 months without any clear reason. Glad to hear you made it through the spell even if it meant a little wear on the nerves. The left pinky thing is especially odd. The mind and body are nothing if not a mystery at times, and the truth is there is rarely enough money and/or available expertise to address it effectively when timing is so key. Not always the docs fault, most of them are just as helpless as we are, but they need to pay for their rent just like us.

it sounds like Ledli's ENT was referring to general auditory nerve damage which is as general, catch all, guess-diagnosis as they come. You could pretty much tell anyone with tinnitus "you have nerve damage" and be partially accurate. That's what sound damage is --damage to the auditory nerve
deleted_user
deleted_user

oops, you posted while I was posted ledli, sorry. Thanks for the clarification. Yep, sounds like he was making his best guess which is fine of course. Guessing as best they can is what 99% of them have to do without being able to open us up but they're still just guesses for the most part. I went to a neurotologist when mine began. They're a better match for tinnitus patients (more appropriate) but mine required MRI's be taken and I wasn't willing to at the time to pay for the scans a second time knowing it would just amount to less money in my account and no real answers so I passed. Hopefully he'll be able to help you without too much of a work up.
deleted_user
deleted_user

Thanks Snowrider i do believe that is what he meant auditory nerve damage.So there is no cure for that either.Yes your right that is his best guess without opening us up.You said it so better than what i was trying to say.Yes that is what im hoping for too that he can somehow help without ordering too many test but you know the standard procedure any time you go to any doctor.They want to do the works.If he wants an MRI i wont get it done unless they have invented a machine that has the deciables under 85 and we all know that doest exists.If i couldnt handle the hearing test i know i wont go thur the MRI. I will post what he says when i see him. Thanks
deleted_user
deleted_user

: )

yes, I didn't want to say it but that was the majority of the reason I denied the MRI. Money was a factor but to this day I feel the first MRI I took has slightly increased my condition as the spike I received afterward never seemed to fully resolve itself. Nothing worse than going to get help for tinnitus and ending up with worse tinnitus just for taking a scan. It's fine for some, just not for me --ever again. You're wise to be cautious, Ledli.
deleted_user
deleted_user

Hi Ledliyl,
Sorry the hearing test made your ear worse. Hopefully it will settle back down soon.I had the same thing happen to my ears last year when I had an ENG test done. Afterwards I wished that I hadn't done the test. I think it was SnowRider that told me sometimes after an experience like that it would have been better if we had spent our money on going out to eat and a movie instead of at the Dr's. That's probably true.

How are you doing on the new vitamins? Are you feeling any difference?

Hope things get better for you soon.

Deb
deleted_user
deleted_user

feel the first MRI I took has slightly increased my condition as the spike I received afterward never seemed to fully resolve itself. Nothing worse than going to get help for tinnitus and ending up with worse tinnitus just for taking a scan



Me too....I know that had some effect on making mine louder.