Suicidal

I can't say for sure, Danish Girl. But maybe you have Visual Snow Syndrome? Floaters and other such disturbances are common symptoms.

Maybe check out The Visual Snow Initiative? They have a series of videos that have helped people reduce their symptoms. It won't do anything for your tinnitus or hyperacusis, and it doesn't help everyone, but I truly think they're a good organization dedicated to their cause.

I wish I could do more for you.

 

(Hug)

I can't offer much at all but I keep weird hours and could at least try to help distract you with online (low effort/mental energy) games and such. Message me if that would help in the least.

 

Hey what happened? Your first post on here was:

Just thought that I'd better briefly introduce myself. I've had loud tinnitus for about ten years and was borderline suicidal for the first four. These days I am much better and only find tinnitus occasionally annoying and distracting (which it is right now as it happens). Even when it is spiking, I can sometimes be oblivious to the racket for hours at a time. So I am here more to support new sufferers than for any other reason.

Were you lying to yourself all these years?

 

I’m very sorry to hear that, one of your posts from years ago on other forum was my beacon of light!

Has something changed, has it gone worse for you?

 

Attention wishful thinkers. FX-322 will not treat noxacusis. It will probably benefit some types of tinnitus and not others. We simply don't know. If your only hope is regenerative medicine, your hope is not a safe bet. Hurry up and reply to this post with anxiety to explain why I'm wrong. But anything to do with regenerative medicine is a huge risk that is unknown and unlikely.

 

@Sleaford Mod oh no! This old post of yours on the first page of this very thread used to give me hope sometimes. What happened?
Has the symptom worsened? Sorry you are suffering like this, Many of us here feel we are at the end of our rope. It's a daily battle for survival.

 

FX-322 will probably not effect noxacusis, I think things that effect the NaV channels are the more likely bet here.

It will not treat non cochlear causes of tinnitus (e.g.. Conductive loss, TMJ, ETD, etc).

You can't really lump all regenerative treatments together. The only one I am aware of that was huge risk was Novartis and their drug required a highly destructive surgical procedure.

FX-322 for instance has had no serious adverse reactions (both in terms of cochlear symptoms and systemic), and in fact when i went for my interview, the investigator said "temporary headache and dizziness" from the IT procedure" was the only adverse reaction from phase 1 at all.

Regenerating hearing is related to tinnitus.

If if it was "stuck in the brain", TMJ treatment would not affect tinnitus and tinnitus with Meniere's would not fluctuate with treatment so we know it's not "stuck in the brain." You treat the underlying cause, you treat the tinnitus.

When hearing loss gets treated acutely, tinnitus often improves with improved audiogram changes (if they tone matched and did extended audiograms, I think we would see even more correlation as the ultra higher frequencies are where more severe damage occurs that often doesn't respond to things like steroids) . Cochlear implant studies also have shown that tinnitus is treated with hearing loss.

As far as whether FX-322 treats hearing loss, that's a fact at his point:

-- word scores have doubled which is completely unprecedented

-- some audiogram changes at 8000Hz, the company is now measuring 8000Hz to 16000Hz because they believe you will see more audiogram changes there.

That's really all I can say atm but luckily there is a Tinnitus Talk Podcast coming out with an interview from them soon.

 

I wonder if those of us who had noxacusis but then it went away (mine is almost gone now) would benefit. I'm inclined to agree with @FGG that noxacusis will likely do best with some kind of painkiller targeted at the Type 2 fibers. I'm really glad that researchers are now distinguishing between loudness and pain hyperacusis but even within pain hyperacusis there seem to be numerous 'sub-types'.

Why do some people experience pain with only certain sounds/frequencies and not others? Is it thus possible for the type 2 neurons to become 'partially' or 'selectively' sensitised? Why do some people experience 'temporary' noxacusis for months-a few years even and then make a good recovery? Why does it become chronic and intractable in others - could this be due to central sensitisation that takes place in some cases?

I've not really seen much literature touching upon these but I guess pain hyperacusis is about as niche as they come when it comes to hearing impairments...

 

I seriously wonder how much semantics have hurt research and understanding of noxacusis. Imo it should probably only be referred to as "noxacusis" and not hyperacusis. I remember on the Dr. Tzounopoulos webcast Q and A, he and his colleague got confused because someone asked about pain hyperacusis and they answered as if they were asked about loudness hyperacusis.

 

Yeah I guess it's partly confusing became out of the 4 'categories' of loudness, pain, annoyance, and fear most patients will present with a mixture of these rather than just one on its own. Liberman has been making the case that noxacusis is fundamentally different from loudness hyperacusis and Hyperacusis Research focuses mainly on noxacusis so at least it's getting more traction these days.

 

Couldn't agree more. They are 100% different medical problems. I have very severe loudness/annoyance hyperacusis. My LDLs are probably 10-20 dB right now. But I don't get prickling or burning in my ear. We should keep the terminology simple and give them different names, rather than have to preface it with a long winded explanation. We should call loudness hyperacusis -"hyperacusis," and pain hyperacusis - "noxacusis."

 

The good news is that this is being surfaced in the media.

The "less good" news is that the video at the top of the page associates this event with Mental Illness. I don't know if that video is randomly picked or if it is the same for everyone, but if it was editorially selected to match the article, it means that in the editor's mind, this event is related to mental illness. That part is concerning to me.

 

A friend of mine agreed to go with me to Switzerland to put and end to this if things don't get better for me in few months.
A great person indeed.

One step forward.

 

It's the same for me, video about mental illness. And 3/4 links at the bottom of the page seems to be about mental health support as well.

 

I’m not sure why a friend would want to do that? Maybe he took out a life insurance policy on you? Just kidding.

An old thread but GABA Calm seems to help some people.

https://www.tinnitustalk.com/threads/gaba-calm-for-tinnitus.21424/

 

You have to be accompanied by someone you know, otherwise you should have to look for a volunteer.

 

@dipp as I understand they won't give you euthanasia for tinnitus, right?

 

Thank you buddy.

I think i have visual snow. The visual snow itself is not something I am bothered by. It's mild, although sometimes I get bad visual snow spikes in total darkness, but it always calms down fairly quick. I also have BFEP which is common in Visual snow sufferers too. I'll look into the Visual Snow Initiative videos. I know they are a very dedicated organisation.

Does that mean you were granted Euthanasia. This is very hard, like almost impossible with tinnitus and hyperacusis.

 

Why not? If a friend of mine was suffering greatly and had tried all to get better and it hadn't worked and they wished for euthanasia, and asked me to assist, I would do that.

 

It does? That makes me glad, if that's the case.

 

Hi

@Johan001
@TheDanishGirl



From someone who had breast cancer... the ENT should have his license taken away for saying that to a patient.

I had breast cancer. Now I have tinnitus and noxacusis.
Having tinnitus/noxacusis is worse.
Disclaimer: I do not wish to offend anyone, I am speaking strictly based on my own experience.
Initially, when I was first told I had cancer, it didn't sink in right away.
I didn't feel any different, I could still do everything... work, drive, visit friends etc...
It was taken seriously and treatment began quickly.
Research indicated a high survival rate. The emotional and physical support I received from the medical community, friends, family, coworkers etc was incredible.
Once surgery/treatments were behind me, life went back to normal.
That was nine years ago.

But this... life will never be normal again.

Tinnitus... hyperacusis... noxacusis... and other afflictions people on this forum suffer from... it affects every aspect of your life.
It isn't taken seriously, the medical community does not have a whole lot to offer, there is not the same support, and it is a very lonely. (Thank god for Tinnitus Talk).

Another huge difference:

I didn't want to die when I had cancer, but I do now that I have tinnitus/noxacusis.

Do not let anyone make you feel that you are not tough enough or that your feelings are not valid. They are!!!!
Hang in there.

We are all in this together.

 

Considering how sensitive this all is, I would agree with you and say you have a GREAT friend.

Not many would be willing to do that, I know for sure that none of my family members or friends would do it.

I’m very sorry to hear you are at that point in this hellish ride with tinnitus.

Have you already made some arrangements? Is that with Dignitas or Pegasos?

How on earth is it possible that ears can do this to us?????

 

From their website - "For many patients, several of these sub-types may coexist. Hyperacusis Research’s work is focused on this last type (referring to pain) as we are dedicated to researching what we call “noise-induced pain."

Bryan Pollard's interview on the Tinnitus Talk Podcast was also focused mainly on pain hyperacusis if I recall correctly!

 

I agree. There are lots of studies into how patients with tinnitus, diabetes, sleep apnea, and other chronic health issues are more likely to contemplate and/or plan and/or commit suicide. The health care world needs to acknowledge that death is the only rational escape from symptoms for many of these people. Right now it’s just suggested to doctors that “diagnosis is a good time to talk to patients about mental health”. It’s a slap in the face.

 

I think that Pegasos is willing to help people with Tinnitus.

 

I have horrible electrical type hissing noise in my left ear. I understand your desperation. I’m still looking for some relief as it is unbearable. Sleep is my only break atm. Looking at TMD right now. I hope you can find some relief until a real treatment is available.

 

How much does it cost for tinnitus relief from Pegasos?

I found it.

https://pegasos-association.com/costs/

 

Deep Sleeping with Ocean Sounds - Gentle Waves...

 

I know of Pegasos, but I think I read somewhere, of several people who applied because of tinnitus, but was denied.

I still consider them myself and maybe my severe hyperacusis on top of tinnitus, will give me a better shot of being accepted.

 

You have captured the essence of this horrid condition in a simple, yet effective way.

The people who have been just diagnosed with cancer can still somewhat enjoy whatever time they have left (assuming it is terminal of course).
This is where we would most likely observe people trying to complete some kind of a "bucket list" and squeeze the last remaining bits out of life while they are still able, before cancer overcomes them.

With tinnitus on the other hand, you no longer get to enjoy anything right from the get go.
There is no point of going through any kind of bucket list, as the sense of joy is completely gone and has been replaced by permanent feeling of extreme anxiety.
That is the part that most people have hard time understanding when trying to compare.
While there is nothing that physically stops you from doing any of those things, there is no point in doing them.

I would offer a further analogy to drive this point home:
Trying to get someone with severe tinnitus/hyperacusis to enjoy life is like making a favorite meal for someone who is sick due to food poisoning.
It's simply not going to happen.