Denver Man Gets Gene Therapy to Restore Hearing

[RB2014]

My hyperacusis must be part anxiety. I absolutely hate it when normal sound levels already distort (crackling). It is almost 10 months for me since the onset of tinnitus, distortion and hyperacusis. I hope distortion at normal sound levels will eventually go away, but starting to doubt this. Than I think my anxiety severity will be a lot better and I will not be unhappy when I am nosey (read normal sound levels ) environments.

News like the continuation of GenVec trial therefore is much needed good news.

It took me time to get better, but here is my understanding of what happens after having gone through this and beaten hyperacusis.

You get tinnitus for whatever reason. You get confused and fearful. Fear creates anxiety. Anxiety makes tinnitus louder which just creates more anxiety and fear. The body kicks in with the fear and we now have heightened senses. In the old days you were running from danger. Your body now gives you super hearing, hyperacusis, so that you can hear whatever is going to attack you. The tinnitus gets louder as your body is now super attentive to anything. You see the tinnitus as danger, so the body is making it louder so you can find it and confront it. The hyperacusis is going to help you fight the danger by giving you an edge, super hearing.

My tinnitus didnt go away, but it did go from a 10 to a 1. My hyperacusis did go away though. In order to get better you must accept what has happened. Clear any and all negative thoughts. Start thinking positive thoughts. Start getting a full nights rest/sleep. Go back to your normal life. This is your best chance of getting better. I'm sure you have read all the threads. The hyperacusis won't get better until your body stops sensing danger. Even then it is a slow process, takes months to get better from this. If you keep with the negative thoughts and anxiety it just feeds the hyperacusis and you will not get better.

You need to get your body working right again and figure out where you are at with this thing. You can't change what has happened, but you can change your reaction to it. Its just like phychology. People don't get better from depression and anxiety until they believe they will get better. Once you believe you will get better, you do get better. Who knows the distortion could be a bi-product of the hyperacusis. It could get better too once your body no longer senses the danger.

 

[Telis]

It took me time to get better, but here is my understanding of what happens after having gone through this and beaten hyperacusis.

You get tinnitus for whatever reason. You get confused and fearful. Fear creates anxiety. Anxiety makes tinnitus louder which just creates more anxiety and fear. The body kicks in with the fear and we now have heightened senses. In the old days you were running from danger. Your body now gives you super hearing, hyperacusis, so that you can hear whatever is going to attack you. The tinnitus gets louder as your body is now super attentive to anything. You see the tinnitus as danger, so the body is making it louder so you can find it and confront it. The hyperacusis is going to help you fight the danger by giving you an edge, super hearing.

My tinnitus didnt go away, but it did go from a 10 to a 1. My hyperacusis did go away though. In order to get better you must accept what has happened. Clear any and all negative thoughts. Start thinking positive thoughts. Start getting a full nights rest/sleep. Go back to your normal life. This is your best chance of getting better. I'm sure you have read all the threads. The hyperacusis won't get better until your body stops sensing danger. Even then it is a slow process, takes months to get better from this. If you keep with the negative thoughts and anxiety it just feeds the hyperacusis and you will not get better.

You need to get your body working right again and figure out where you are at with this thing. You can't change what has happened, but you can change your reaction to it. Its just like phychology. People don't get better from depression and anxiety until they believe they will get better. Once you believe you will get better, you do get better. Who knows the distortion could be a bi-product of the hyperacusis. It could get better too once your body no longer senses the danger.

Oh you just have to believe you will get better and be more brave? Ahhhh ok, Suuuure. This is all just a mental problem!! Got it.

 

[RB2014]

Oh you just have to believe you will get better and be more brave? Ahhhh ok, Suuuure. This is all just a mental problem!! Got it.

Thats exactly right.

 

[Telis]

Thats exactly right.

Yeah if you are f//kin head case.

 

[RB2014]

Yeah if you are f//kin head case.

It all starts in the ear and then ends up in the head. You don't have to be a headcase to have this stuff going on, but T will mess with your head pretty badly.

I'm guessing/hoping you don't have Hyperacusis since it doesn't sound like you have let this affect you as much. Thats the way to beat this thing. You won't get rid of the T, but the less you care the less you hear it. If you get scared, the H will come and it just makes everything 100x worst.

With H, I couldn't even drive to work the road was so loud. Taking a shower is painful from the noise of the water. It all just adds to all the stuff going on and just makes you feel even worst. Having T is one thing, but having T and H is just torture. You get into a negative thinking trap that eventually does turn you into a head case. Happened to me and it wasn't fun. Took me a while to get better. Now I just have T and I can cope better. I can finally think straight again, but for a while I couldn't.

 

[Reinier]

@RB2014 I do hope much of it is anxiety. Because it is already 10 months since the onset I am inclined to think it will not improve anymore. But your experience makes me a little bit more hopeful it will improve. Perhaps it will be years, not months. As long as there is improvement I am happy. At the moment I believe improvement stopped some months ago.

I will keep on reading experiences from other people on this forum.

 

[RB2014]

Reinier, even after I got rid of my anxiety it still took many months for the H to go away. It was a very slow recovery. If you are still having anxiety over this, then you have not begun the recovery process from H and your T will remain elevated. If you get a chance read over some of my previous posts. I told my story in the clonazepam thread. I went from never realizing I had T to having a jet engine going off in my head and now to just coping with T.

 

[Reinier]

If you are still having anxiety over this, then you have not begun the recovery process from H and your T will remain elevated. If you get a chance read over some of my previous posts. I told my story in the clonazepam thread. I went from never realizing I had T to having a jet engine going off in my head and now to just coping with T.

Anxiety is still present. I am looking at ways to get rid of this. Not easy when you forget about the condition and someone talks to you in a loud voice or tinnitus flairs up again.

I will read through your previous posts. I feel your experiences are in some ways similar to mine.

 

[BohemianLife]

Are there any comment from patient ? Or do you know did anyone gain her/him hearing back ?

 

[Telis]

It all starts in the ear and then ends up in the head. You don't have to be a headcase to have this stuff going on, but T will mess with your head pretty badly.

I'm guessing/hoping you don't have Hyperacusis since it doesn't sound like you have let this affect you as much. Thats the way to beat this thing. You won't get rid of the T, but the less you care the less you hear it. If you get scared, the H will come and it just makes everything 100x worst.

With H, I couldn't even drive to work the road was so loud. Taking a shower is painful from the noise of the water. It all just adds to all the stuff going on and just makes you feel even worst. Having T is one thing, but having T and H is just torture. You get into a negative thinking trap that eventually does turn you into a head case. Happened to me and it wasn't fun. Took me a while to get better. Now I just have T and I can cope better. I can finally think straight again, but for a while I couldn't.

I've had devestating H for two years, I do not believe it is mental at all For me. I've exposed myself to more than enough noise daily with little to no fear and still experience constant sensitivity and pain.

 

[Reinier]

I've had devestating H for two years, I do not believe it is mental at all For me.

I mentioned this before, but for me personally, I know it is physical. Perhaps exacerbated by my emotional state. I am open to the notion it is part anxiety.
It exists next to my tinnitus, hard of hearing and distortion, right after the explosion.
Perhaps time will tell what percentage is anxiety.

 

[Reinier]

Are there any comment from patient ? Or do you know did anyone gain her/him hearing back ?

The only reports I have read are in this thread. It is only subjective. People mentioning they believe hearing "new sounds".

 

[tomytl]

I recently read from a participant that he is doing well... but I guess there isn't a real hearing shift
in dB, but this was expected. All researchers in the field didn't really expect a significant shift
in hearing threshold.
But it would be a highlight if they could proof some minimal regeneration. It's a proof of concept study, so
if it's working, it would go back to the lab anyway.

 

[Reinier]

But it would be a highlight if they could proof some minimal regeneration

Absolutely!
Nothing official yet. But I didn't expect that. They mentioned 2017 for the initial part. I do not expect anything unofficial before that. You don't want too much speculation one way or the other I suppose.

 

[jeff W]

Back in business folks. Get that Robinhood stock app out. http://www.prnewswire.com/news-rele...-hearing-loss-clinical-program-300260431.html

 

[Reinier]

Fascinating to look at the stock diagram.
http://finance.yahoo.com/echarts?s=...64400,"range":"1d","allowChartStacking":true}
Short after the announcement stock went up considerably for a short moment.

 

[jeff W]

Fascinating to look at the stock diagram.
http://finance.yahoo.com/echarts?s=GNVC+Interactive#{"customRangeStart":1454886000,"customRangeEnd":1457564400,"range":"1d","allowChartStacking":true}
Short after the announcement stock went up considerably for a short moment.

I am watching it too! lol I am thinking of getting a dedicated display for it on my wall !

 

[Reinier]

I made a shortcut on my desktop (-;
It will be interesting to see what the stock price is in 2017 compared to this year, after the first results are made public.
One could gamble and buy stock before the end of clinical trial number 1.

 

[jeff W]

I made a shortcut on my desktop (-;
It will be interesting to see what the stock price is in 2017 compared to this year, after the first results are made public.
One could gamble and buy stock before the end of clinical trial number 1.

Theres a guy called br@d L0ncar, follow him if you are on twitter, he is obsessed with biotech. That would be an interesting gamble. If you look at what Genvec opened at originally you can see how much money people can lose.

 

[Reinier]

If you look at what Genvec opened at originally you can see how much money people can lose.

I realise that.
Therefore I don't think I want to take the risk.
I keep reading on the internet that biotechnology stock is going to be interesting. This should be an indication that a lot is happening regarding research and discoveries.
You can lose much but also gain a lot. I remember stock prices for GenVec being half of what they are now. This is when the trial was paused. And I know they have been a lot higher too.
Unfortunately stock prices respond and not predict.

 

[volsung37]

If you want to lose money very quickly invest in biotech stocks. Been there got the tee shirt. They are the ultimate money pits.

 

[Ian Mac]

I used to hear high pitch noises in everything, fans, refrigerators, cars passing on the highway. All would have this high pitched ringing to them. One day I said maybe in paying to much attention to any high pitched noise, I stopped listening for it and I stopped hearing the high pitch noises, unless I again start listening for them. I was putting too much attention on any high pitched noise because my tinitus was also high pitched and I got scared of all high pitched noises. For me hyperacusis stopped when I stopped listening for high pitched sounds inside other everyday sounds.

 

[Beste]

I used to hear high pitch noises in everything, fans, refrigerators, cars passing on the highway. All would have this high pitched ringing to them. One day I said maybe in paying to much attention to any high pitched noise, I stopped listening for it and I stopped hearing the high pitch noises, unless I again start listening for them. I was putting too much attention on any high pitched noise because my tinitus was also high pitched and I got scared of all high pitched noises. For me hyperacusis stopped when I stopped listening for high pitched sounds inside other everyday sounds.

Same. When I stopped listening high pitched sounds my hyperacusis vanished completely. Lately, I started to listen them again and I am developing mild hyperacusis. Well done for me.

 

[gotyoubynuts]

Same. When I stopped listening high pitched sounds my hyperacusis vanished completely. Lately, I started to listen them again and I am developing mild hyperacusis. Well done for me.

I hope you understand your ear issues are caused by your GAD.

It is not possible to get tinnitus, hyperacusis, pulsatile tinnitus and everything else you are experiencing.

I think you are also hypochondriac. Does the below resonate with you?

Hypochondriasis, also known as hypochondria, health anxiety or illness anxiety disorder, refers to worry about having a serious illness. This debilitating condition is the result of an inaccurate perception of the condition of body or mind despite the absence of an actual medical condition.

 

[Beste]

I hope you understand your ear issues are caused by your GAD.

It is not possible to get tinnitus, hyperacusis, pulsatile tinnitus and everything else you are experiencing.

I think you are also hypochondriac. Does the below resonate with you?

Hypochondriasis, also known as hypochondria, health anxiety or illness anxiety disorder, refers to worry about having a serious illness. This debilitating condition is the result of an inaccurate perception of the condition of body or mind despite the absence of an actual medical condition.

said the person who knows nothing about benzo withdrawal..

God how bad I wish you were right though.

 

[Ian Mac]

I hope you understand your ear issues are caused by your GAD.

It is not possible to get tinnitus, hyperacusis, pulsatile tinnitus and everything else you are experiencing.

I think you are also hypochondriac. Does the below resonate with you?

Hypochondriasis, also known as hypochondria, health anxiety or illness anxiety disorder, refers to worry about having a serious illness. This debilitating condition is the result of an inaccurate perception of the condition of body or mind despite the absence of an actual medical condition.

I don't know what else @Beste is experiencing but It's certainly possible to have tinnitus pulsatile tinnitus and hyperacusis AND General Anxiety Disorder. However as you said GAD simply on its own can cause all three, in mild form of course.

 

[Beste]

I don't know what else @Beste is experiencing but It's certainly possible to have tinnitus pulsatile tinnitus and hyperacusis AND General Anxiety Disorder. However as you said GAD simply on its own can cause all three, in mild form of course.

I have been suffering from GAD for the last 6 years but no ringing in my ears. Not a single one. Then I quited a benzo cold turkey and then BAM! Tinnitus! There are millions of people got their T from benzos or w/ds. Just look at BenzoBuddies. We all f*cked up in our brains. I count myself lucky to only have tinnitus as a w/d symptom. I know a couple of people do not even know their names.. but they also have very very bad T.

 

[Ian Mac]

@Beste personally I've been prescribed Valium at 16, stopped cold turkey. Xanex at 20, stopped cold turkey.
Clonazepam earlier this year, stopped cold turkey. My first time ever taking Benzos (without prescription) I took 14mg of Xanax and O.D. Went to the emergency room. I've never noticed any Tinnitus from these events or any other medication and I imagine that it's really strange to get serious Tinnitus this way. I am not a doctor, but if you did get Tinnitus this way I think it is not a big deal, However I can't hear what your hearing so what do I know? Nothing about your Tinnitus. I know that in my experience there are really damaging disease infections bacteria and fungus that are truely so ototoxic that they F*** your auditory and balance systems beyond what, in my opinion, even a lifetime of benzo activity starting and stopped would do. I hope this news finds you well I don't mean to make light of your tinnitus but I do mean to inform you that I believe there are far more disabling types of tinnitus. I hope this new finds you well I don't mean to make light of your Tinnitus I do mean to inform you that there are far more disabling types of T.

 

[jeff W]

said the person who knows nothing about benzo withdrawal..

God how bad I wish you were right though.

RE: Benzo withdrawal

 

[jeff W]

Rivolta mentions this trial here:

You can see they are attempting to find the ceiling for saftey, bigger doses for bigger results.