Very Severe Tinnitus and Hyperacusis After One Year

[vermillion]

Benzo withdrawal can cause permanent damage to nerve cells.

@andreus Any better? You've been on benzos for a a while. Did you stop cold turkey? Did you experience other withdrawal symptoms?

You can also get too much glutamate from other sources such as MSG.

MSG is being widely used in asian food.

 

[fhs]

MSG is being widely used in asian food.

From what I've read usually very small amounts of MSG that are used in products at the supermarket are safe but mom & pop restauarants that use MSG could possibly put way more MSG than needed. It only takes a tablespoon of MSG to get too much of it. I'm sure some restaurants put that much due to the idea that more MSG makes food taste better.

 

[andreus]

I dont't eat asian food or food with msg and don't go in restaurants (The only idea to go in a restaurant is a nightmare. Even go to my doctor is difficult despite my ears protections).
Vermillon, no I don't physically better. I 've lost 8 kilos these last two weeks but my wife was far away with my daughter (dancing auditions) but she just came back and I will eat more. I was not on cold turkey even if fast began my withdrawal which is advised when you had high doses during a short period. I had low doses during a longer period. My others symptoms are of course anxiety (but more now because of T and H) ans suicidal ideas (for the same reason). I had only one time an electric sensation in the body last july. At this time, I didn't know it was a symptom of withdrawal. My withdrawal began in november and isn't finished for benzos but I stopped before AD, neurol and sleeping peels. My eyes are weak (retinal problems, lots of floaters...) (and better thanks homeopathic medicine) but benzos didn't make them worse. They only concern ears. Usually, people have many symptoms, not me. My doctor told me that neurologists don't really know how to heal neurologic diseases (Parkinson, Charcot, Alzeihmer...) and benzos T and H are more a neurological problem than an ear problem. No therapy (TRT...) can help a T and H problem when you're on withdrawal. Dr Mudry in Lausanne who proposes désynchra (neuromodulation) writes on his website that it doesn't concern people who take benzos.
Taking benzos was the worst mistake of my life: It was so stupid; I slept so well with them: I should have asked myself it was not normal.
I'me very pessimist for my future but my wife supports me and tries to convince me (intuition) I will feel better in the future (stopping surviving and living again).

 

[vermillion]

@andreus, I wish I could just snap my fingers so all those symptoms to disappear for each one of us. Blaming yourself for following a drug treatment is useless. Will only reinforce your existing distress which is already too much. There aren't many words to say. My heart goes out to you. It's really important that your wife supports you in this and you are not alone. Hang in there buddy. You have to give a bit of time to see if it gets better and find something that may help. Take care of yourself. See the success story of @billie48. He overcame his bad H and made peace with his screaming T. It's possible.

 

[andreus]

Thank you very much Vermillon for your support. I red of course successful Billi's story and others. But the difference is that their tinnitus didn't became worse. In june and july, I could work, drive away in spite of my T and H., no more now. Your brain can adapt to heavy T with time, but when it changes every week, its impossible. Moreover, many people who have heavy T and write their story don't have both T and H (for Billie, H vanished after one year). The good news today is that my daughter was accepted in a very good french school of ballet...
And I have new T which regularly appear (5 now; I red that a man had 50 different sounds in the head). I'me not helping by my anxious personality but I appreciate to be supported by people like you who have problems too. I know that medical situation is difficult in your country; it's better in France but it doesn't really help because there's no treatement really efficient against T and H. Moreover, french government doesn't officially recognize severe T and H as handicaps and TRT... are not paid by the health system. I got a long term disease vacancy period for anxiety and depression, not for T and H.
A famous TV french actor (I didn't know him because I don't have TV) became deaf with heavy tinnitus the day of his 50's birthday. and he wrote a book ("Shut up tinnitus") in order to make people more conscious of this problem and he's a member of the french tinnitus association. He says that he can accept to be deaf but not the tinnitus.

 

[GregCA]

A famous TV french actor (I didn't know him because I don't have TV) became deaf with heavy tinnitus the day of his 50's birthday. and he wrote a book ("Shut up tinnitus") in order to make people more conscious of this problem and he's a member of the french tinnitus association. He says that he can accept to be deaf but not the tinnitus.

And this is "his" petition. Please sign it and share it if you haven't already.

 

[vermillion]

@andreus
First of all congratulations for your daughter's achievement. I happen to be in the faculty of the Greek National School of Dance. It's one of the best professional dancing schools in Europe. I only mention this cause I know from my personal experience how hard work ballet can be. Unfortunately I don't know if I will be able to continue my career which I so love, under these circumstances. Anyway, kudos to your daughter!!!
As for all the other cases. It is inspiring to read success stories etc. and frustrating to read the opposite. However tinnitus is different for everyone. It's so personal due to it's subjective nature. I suppose there may be people out there who managed their severe case of T and H. I hope for yours to soften. I know what you mean. Mine also progressed quite a lot during my 5 months into this. Tough luck. I don't know what lies ahead for me. There are no answers for the future. Each one of us have to find our own way to survive. I cannot imagine your distress right now, but I feel for you. And yes health system here sucks.

And this is "his" petition. Please sign it and share it if you haven't already.

And I was about to start learning French till T kicked in. Dam it!
Signed already btw.

 

[billie48]

That feels me more desperate.

There is no need to be your own doctor to think that benzo withdrawal has done the permanent damage as claimed in your case. You have H which can fade or disappear as your H is still relatively young. Even if it stays, people have used meds to help cure it like @Danny Boy did. If you are talking about 'S', then you need to seriously research or talk to Danny Boy about using the meds to try heal it. Also, people have been able to function even with on-going H and you don't need to think of doing the unthinkable to harm yourself and hurt your loved ones in the process. Currently, your body is rejecting your reality and so you are in a high state of stress.

You should search Dr. Charlie's posts if you can still find them. He was here actively a few years back. He said he has lived with H for years and has managed to adjusted to it. So I exhort you to think more positively about your case. Instead of focusing on the bad cases, think instead of how others have done okay in life even with severe H, and 'S' simply isn't going to solve anything. Try to push it off your mind. The dark thought can come and go during extreme suffering and hopefully you will slowly gather the strength to say a affirmative 'NO' to it as I and many others had to do.

Here is Dr. Charlie's introductory post in which he opens the post by saying:

"I am a retired ENT physician and surgeon who also suffered from tinnitus for years. My tinnitus began in 1997, before I retired from my practice. Later on, I also developed hyperacusis. Whenever I focus on it, I still hear the noise of tinnitus, but I no longer suffer from it. My hyperacusis remains problematic, but I have learned how to deal with noisy situations to avoid most of the pain."

https://www.tinnitustalk.com/threads/dr-charlie-—-ent-specialist-with-tinnitus.6935/

I also mention the story of Melody Gardot in my success story as one of my guiding lights. She is an excellent Jazz singer who has both T & H, and her H was bad enough that she has to wear earplugs often in most places she went. Not sure if her initial H was so bad that she had gone through time where she couldn't go out like you or like me initially. This is because she had to be hospitalized for a year after being struck by a SUV which did massive damage to her body causing horrible pain all over. This is besides the severe T & H she already suffered. She had to learn playing guitar while lying down in the hospital as she couldn't walk for a long time. Despite these tough challenges of immobility, severe T & H and pain, she never gave up and she eventually overcame and recovered well enough to embark on her singing career. She is one of my guiding lights besides Zoe Cartwright who has total unmaskable T due to total deafness from young 15. I told myself if these ladies could overcome their challenges and with the proper positive attitude could move on with life AFTER SOME TIME, why shouldn't I not do the same to wait out more and to embark on positivity like them. When I changed my approach after the initial fear and trauma, after the confinement, depression and sleeplessness, my condition slowly improved and the H slowly healed. Don't push yourself and don't compare with others. There is no need to jump to conclusion that your future will be as bad as you think. This is called 'Catastrophic Thinking', a cognitive distortion in CBT. When you take a step back and don't pay much attention to T & H, and slowly go back to living, it will be a matter of time that your situation will improve. But do allow your body enough time to heal.

Take good care. God bless.

 

[billie48]

He says that he can accept to be deaf but not the tinnitus.

Too bad sometimes people can have both total deafness and unmaskable tinnitus (as can't hear anything else outside except T). This is what happens to this pretty lady Zoe Cartwright who became deaf at 15 and then this horrible T came 7/24. In fact this short film she titled it as '7.24.52.10', meaning her unmaskable T has been with her 7/24, 52 weeks a year and for 10 years at the time of making the film. Watch it and feel what it is like to have her T unmaskable 7/24:

 

[vermillion]

@billie48 so much respect for you.
Your words gives so much strength. I wish I can meet people like you in these hard times. Be safe!

 

[1MW]

I have the same situation like you i had a problem with my ear and benzos made it terrific

 

[Manny]

And this is "his" petition. Please sign it and share it if you haven't already.

I know this post is a little old, but just signed. It's at nearly 40k signatures.

 

[CAgirl]

@GregCA I found this post of yours in this thread from 3 years ago which looks like when you were 6 months out. Do you feel the same way now about your tinnitus? I feel the similar to the way as you did in this post and our loudness level sounds the same. However, I still have a lot of anxiety as well since I'm only one month out.

 

[Peter Q]

@billie48, I came across this book today. Haven't read it, but it's about another tinnitus success story. Frédéric Deban is a French actor who seems to have sucessfully treated his tinnitus.

https://www.amazon.fr/dp/2813223484...NTDzIoiLqiEvwGE56qDKjhxvKsJkcZ0Hcnvo4hU-QI1HQ

 

[PeteJ]

Yeah, books will repair my ears and severe tinnitus. Why aren't tinnitus researchers handing out books?

 

[Tanni]

Yeah, books will repair my ears and severe tinnitus. Why aren't tinnitus researchers handing out books?

What a dumb comment, lol.

 

[GregCA]

@billie48, I came across this book today. Haven't read it, but it's about another tinnitus success story. Frédéric Deban is a French actor who seems to have sucessfully treated his tinnitus.

It looks like he was successful with a Cochlear Implant.