Nerve Block for Tinnitus Relief

[Codaz]

@rtwombly

Why are you not in the camp of muscle relaxants / anti epilepticums? I can definately say that movement of my neck and the physiotherapy treatments I got have made the T 70% better already. If no improvement is made anymore, I fill look into the options Dr De Ridder gave me. He published a lot of tinnitus papers in international journals, so who am I to judge.

 

[bedouin]

Why are you not in the camp of muscle relaxants / anti epilepticums?

Love the potassium channel glee club and anti epilepticums refs btw
Sorry to jump in ... just my 2 cents.... Retigabine is a potassium channel opener and prescribed as an anti epileptic.

What muscle relaxants / anti epilepticums do you recommend? I have some a "clicky neck". In fact I am forever stretching out mt left side. It definitely got worse when the t started. I just thought it was due to me being overly-aware of t (mainly in my left ear) and that I was tensing that side of my body (close to the injury) in a sort of over-protective way. I did many hours of a physio working my jaw and neck. She was specialized in working with vertigo patients. t gave me BAD dizziness in the beginning. Lasted about 6 months. One thing i am grateful for that has gone. I think my vestibular system was also "temporarily" (thanks goodness) damaged from the noise exposure back in Nov 2013.

I can click my jaw at will and try and use a bite plate at night. I am just wondering now if there is any way i can reduce my t through investigating the tmj route cause of t. Target the neck close to the ear maybe? I was so sure my t is from noise exposure (pretty self evident - rock concert - next day - loud t - cause and effect) but now i am wondering if it is a double whammy and perhaps i could bring t down by looking down this route of therapy. Any input most welcome.

 

[Codaz]

When I looked into the TMJ symptoms the neck was mentioned too.

 

[rtwombly]

@rtwombly

Why are you not in the camp of muscle relaxants / anti epilepticums? I can definately say that movement of my neck and the physiotherapy treatments I got have made the T 70% better already.

I've been taking chiropractic treatments meant to relax my neck. On the conventional front I started out with two doctors who tried nothing and were all out of ideas, but just went to a new guy who wants me to try clonezepam to see if it'll help relaxation and if that also helps the ringing/whirring/whatever will go forward in one diagnostic direction, if not will go in another. So I'm not really out of any camp, just flirting around the edges.

 

[Codaz]

I've been taking chiropractic treatments meant to relax my neck. On the conventional front I started out with two doctors who tried nothing and were all out of ideas, but just went to a new guy who wants me to try clonezepam to see if it'll help relaxation and if that also helps the ringing/whirring/whatever will go forward in one diagnostic direction, if not will go in another. So I'm not really out of any camp, just flirting around the edges.

The thing is that clonazepam is highly addictive. If not properly tapered off you are in risk of severe side effects. I have it, but I will not take it. Even De Ridder suggested it to me via mail 2 weeks ago.

2015 is when I'm going to start taking some T drugs, but for now it's physiotherapy / accupuncture only.

Still extremely fluctuating. And dies down in a quiet room. Neck hurts. I still hate it that there is no solution in the pipeline for the next couple of years. Thats why I stay off this forum as much as possible. Just misery and nothing.
The good thing is that I'm improving, week by week. 2-3 prc per 3 weeks. It is the only thing I have, othereise I would have been in a mental home or worse.

 

[rtwombly]

I still hate it that there is no solution in the pipeline for the next couple of years. Thats why I stay off this forum as much as possible. Just misery and nothing.

That's not necessarily true. There are a whole bunch of things in the works, it's just that nobody knows what will work, nobody knows if the progress they do get with various remedies will work for other people, be sustainable, etc.

It's brain surgery by proxy. We shouldn't be surprised it's complicated and fraught with frustration.

Glad you're getting better!

 

[Codaz]

Since last weekend, with a lot of pain my T diminished to a level that I forgot it yesterday. Still I can summon it with presses on my face, if I don't do that it is very low but fluctuating between 0,5/10 and 2/10. So again a decrease.

 

[jeannie]

I have started physical therapy for my neck,and just did new exercises and my tinnitus is screaming louder than usual,its been worse ...I go back Monday .

 

[Frédéric]

I found this link : http://onlinelibrary.wiley.com/doi/10.1111/papr.12348/abstract
I don't know if we are speaking about the same thing. Anyway, I contacted Henk Koning. He told me I was not eligible for the Percutaneous Radiofrequency Lesion of the Superior Cervical Sympathetic Ganglion. He did not explain me why.

 

[Ian Mac]

Try sedating the auditory nerve while you are awake and then listening for any T. If you don't hear anything then the damage is within your ear and future treatments can target that area for you, or if you are desperate a doctor in another country can perform an auditory nerve section if you're desperate again

 

[Codaz]

Try sedating the auditory nerve while you are awake and then listening for any T. If you don't hear anything then the damage is within your ear and future treatments can target that area for you, or if you are desperate a doctor in another country can perform an auditory nerve section if you're desperate again

It was already proven that auditory nerve cutting didn't stop the T. Some patients reported being deaf and still having T.

 

[Ian Mac]

It was already proven that auditory nerve cutting didn't stop the T. Some patients reported being deaf and still having T.

Not all T is the same. In some patients it does work, hence my suggestion to numb the vestibucochlear nerve and *if the ringing stops* then cutting the nerve would have the same effect but permanently. It's then possible another type of tinnitus would develope from the lack of input to the brain unfortunately we don't know.

 

[Andrea White]

Hello rtwombly - I've been following the discussion about the Potassium channels - agree that this looks very interesting, did you know that Scifluor (US Pharma) is looking at re-engineering Retigabine and calling it SF0034
as a more effective (and less side effects) Potassium channel ( glutamate inhibitor). As I understand it the current thinking is that the Glutamate overexcites the neurons and the GABA calms them down - when this is not happening properly, the noise starts up as Tinnitus. It looks like it will be a few years before anything might be developed. Shame it will take so long. Let's hope!

A

 

[suze]

GABA can be increased by meditation. That's been one of the mainstays of panic disorder treatments for two decades (Claire Weekes, Herbert Benson, Pelletier (sp?)). If increased GABA helps or quieting the nerves helps, wouldn't monks be T free? They call meditation induced T dibba-sota. I thought my pulsatile T could be from irritated or damaged nerves in my neck until I read about this "divine noise" that occurs deep in meditation. Do monks increase or decrease blood flow? Nerve impulses? Would like to see a brain study on it.

 

[Penate]

Sf0034 is no more in the game now is RL-81 ,yesterday I had a good conversation with professor Thanos he told me SciFluor planing start face 1 in 2 years because the money and nobody cares, I big saying many times in this forum we have to do something, like sending imail to SciFluor, nobody listens.

 

[Codaz]

Sf0034 is no more in the game now is RL-81 ,yesterday I had a good conversation with professor Thanos he told me SciFluor planing start face 1 in 2 years because the money and nobody cares, I big saying many times in this forum we have to do something, like sending imail to SciFluor, nobody listens.

What are professor Thanos his hopes? What are his next plans? 2 years pfff that's quite a long time.

 

[UHPTS]

4 years later and there's still nothing

 

[Juan]

4 years later and there's still nothing

That's typical. There are barely advances in research or trials to try to restore hearing, or heal hearing issues like tinnitus or hyperacusis.

 

[serendipity1996]

That's typical. There are barely advances in research or trials to try to restore hearing, or heal hearing issues like tinnitus or hyperacusis.

I don't understand how you can say this when there are currently several companies in clinical trials - Frequency, Otonomy, Pipeline etc with Frequency having demonstrated meaningful improvement with a safety dose. If there have been barely any advances, please tell me which companies were running clinical trials for hair cell regeneration and cochlear synaptopathy 4 years ago? I understand that we shouldn't celebrate prematurely etc but this is just incorrect that no progress has been made.

 

[ASilverLight]

It's completely new science and it unfortunately takes a lot of time. We all wish it would go faster but we need it to be safe and we need it to work. There are advances, even Prof. Thanos is working on things.

 

[Lucifer]

I don't understand how you can say this when there are currently several companies in clinical trials - Frequency, Otonomy, Pipeline etc with Frequency having demonstrated meaningful improvement with a safety dose. If there have been barely any advances, please tell me which companies were running clinical trials for hair cell regeneration and cochlear synaptopathy 4 years ago? I understand that we shouldn't celebrate prematurely etc but this is just incorrect that no progress has been made.

I feel like during this year there have been more successful clinical trials compared to previously. We are so close to a cure. I hope FX-322 does its job and gets rid of hyperacusis and tinnitus.

 

[Sevv]

I don't understand how you can say this when there are currently several companies in clinical trials - Frequency, Otonomy, Pipeline etc with Frequency having demonstrated meaningful improvement with a safety dose. If there have been barely any advances, please tell me which companies were running clinical trials for hair cell regeneration and cochlear synaptopathy 4 years ago? I understand that we shouldn't celebrate prematurely etc but this is just incorrect that no progress has been made.

My personal belief is that we have the best chances with FX-322 and OTO-413 since they have the most promising science behind them right now. I expect however that Neuralink might be one of the gold standard treatments in 10 years unless we have stem cell transplantation for sound ranges with profound hearing loss (which still contribute to tinnitus).