Suicidal

Thank you x

 

What was the original cause of your hyperacusis? Was it noise trauma? Why do you think the hyperacusis went away?

 

I don't know how to survive to tinnitus.

 

Hello, thanks for sharing your story. Sorry you've also had to deal with this nightmare. I totally understand the coworker/office struggles :/

My burning isn't really a shooting pain. The best way I can describe it is it almost feels like that sensation when you're out in really cold wind, like it's piercingly cold, blowing on your face/legs. But it persists even after being out of the wind. It's the strangest sensation, never felt anything like it. Not sure how much anxiety plays into it or if it's some kind of actual nerve disorder.

Not necessarily "pain" but definitely a 10 on a discomfort level, approaching pain. I thought perhaps wind triggered it, but then I got it bad in the middle of the night when I woke up.

It's also as if my body has a hard time adjusting to temperature. My mom cracked our front door open and I immediately felt freezing cold and had to warm up some tea/grab a blanket. Not sure what is going on but I'm deathly afraid to try any sort of medication as I fear of worsening my Tinnitus and I'm in my mid twenties so I'm sure I'll still have plenty opportunities to make my tinnitus worse

Did the anxiety meds help with your burning, or do you find that it subsided on its' own over time?

 

It takes practice patience and persistence.
Often people ditch it because the effects are not immediate.

 

Hi @Juan,

I'm not sure. I mostly had it in the right ear so that would indicate noise trauma I suppose, although I don't remember any particular incident. My Tinnitus spiked around the same time, in the same ear. It could also be down to stress, or maybe a combination of things.

I think what helped was either time, or exposure to ordinary sounds without protection. I tried to avoid over-protecting as I felt that would only make it worse in the long run. I was also careful to protect around any dangerous sounds. The hardest part of Hyperacusis is getting the balance right, I think.

 

Thank goodness for a balanced post speaking uncommon sense.
We all know there is currently no cure and not even an effective treatment.
Therapists do give severe sufferers the opportunity to talk through their anxiety and their very real fears.
It can make a difference.
This procedure can help people reach an adaptation or a partial acceptance of their hateful condition, which can and does save lives.

Yes - of course we need a real treatment - but since we don’t have one, should we kick out the only therapy that is saving lives.
I do not see this as an appropriate arena for militancy.

 

No worries @Orions Pain.

Sounds like my pain was slightly different to yours. Yours is a bit like the below maybe?

Burning Skin Sensation

Anxiety/stress can do really weird things to the body. I'm not saying that it definitely is anxiety/stress, and if you're worried you should get it checked out with a doctor, but I have had a lot of weird symptoms that have exactly mimicked a nerve disorder (burning nerve pain, twitching, aural migraines etc) and it's all cleared up so far.

I'm totally with you on being afraid to try medication. It's a real rabbit hole -- whatever you type in will bring up a negative experience so it feels like the best bet is to steer clear altogether. However, some of them are quite safe and the potential upside could outweigh the risks.

The pain was beginning to subside when I started taking the Amitriptyline, so I imagine it would have gone on it's own but I won't know for certain until I stop the medication.

 

I did it for quite a while.

 

There's no good news around the corner. Others might agree with your post but I don't. I will always disagree with people like you.

I have ear pain and horrible loud tinnitus and I think people should be allowed to suicide if they can't take it anymore. Call it euthanasia or assisted suicide, whatever you want. No one should be forced to live with this if they don't want to.

 

It's fiction and fantasy.

 

I would like to exercise but my ear is in pain most of the time. Often, I don't know why or what the cause is. My ear almost always feels like something is wrong. Discomfort or just not normal. My tinnitus is so loud - 10/10 in severity and volume. It went to 7/10 or so earlier today for a good hour or two. But, that's rare. That's still loud but not as severe as usual. That's how bad it is usually. As I type this, I want to put a bullet in my head. This is inhumane. I hate doctors, researchers and governments. I hate their fucking guts. All they care about is money.

The volume is unreal. No one should have to endure this. I hate that my ears got so fucked up. I wish I could have avoided this somehow. I want to die so I don't endure this anymore.

 

The issue is that CBT, mindfulness and meditation aren't enough for everyone and for some don't help at all. Also, the Cognitive Model of Tinnitus Distress states that tinnitus can't be debilitating in itself and that it's only the patient's emotional reaction to the tinnitus that makes it debilitating, thus loudness doesn't matter in any case. CBT approaches for tinnitus management are based on this Cognitive Model of Distress. That's why people are criticising CBT and mindfulness approaches - they're not saying these approaches don't work at all but that they inevitably spread harmful misconceptions.

 

I'm not against it, but after how much time should it become a possibility?

 

Hi B,

There can’t be a fixed answer really. I would understand if someone had catastrophic tinnitus and checked out in a hurry, say a few months.

My inclination is two to three years in general to see how things pan out. Sounds stupid saying that... but it's sort of what I promised myself before undergoing hyperacusis round window surgery or deep brain stimulation for my tinnitus. Both would be surgeries before an assisted suicide if they didn’t work.

If a person gets tinnitus in 2020 or not long ago, they need to deal with the awful vicious and shitty upheaval by any means necessary, be it meditation, exercise , drugs or a combination of. They owe it to themselves to hang tight for at least 2 years as much will likely change, statistically speaking for many people.

Allan1967 is one member I had a relationship with who pulled the plug. There are so many more. This is a horrible, life is often that way. I still choose life... most of us do. Death is the promise of silence, of peace, of the end of misery. It’s a good idea to try everything to see if one can experience a moment of peace or distraction from the noise. If one has a moment they theoretically can build on that.

 

The relationship between loudness and distress
The cognitive model proposes that distorted perception contributes to tinnitus distress. Whereas most studies report weak correlations between tinnitus distress and psychoacoustic loudness, self-reported loudness and tinnitus distress moderately correlate. For example, Wallhausser-Franke et al. asked more than 4000 members of the German Tinnitus Association to rate their tinnitus loudness on a scale of 1–10 and their tinnitus distress on the brief version of the German TQ, and found a moderate correlation between the two, concluding that self-reported loudness and distress represent and should be assessed as two different constructs. In an earlier study of nearly 5000 members of the same association, Hiller and Goebel again found that Klockhoff and Lindblom grading and TQ scores only moderately correlated. Kuk et al. and Weise et al. also found moderate correlations between scores on a tinnitus handicap measure and loudness self-rated on a VAS. In general, therefore, self-reported loudness scales measure a construct that is different from those measured by either tinnitus distress questionnaires or the psychoacoustic estimates of tinnitus loudness matched to external tones. Consistent reports of moderate correlation between self-reported loudness and tinnitus distress suggest some relationship between the two measures.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4186305/

 

Yes of course I understand Autumnly.

It is clearly a misconception to believe that psychologically geared therapies are all that is needed.

People are suffering hell on earth.
I am suffering hell on earth.
Like many others, I lost an entire way of life.

But endlessly railing against the only support that is currently available to sufferers makes no sense.

Do we really want to pull the rug out from under desperate peoples feet by removing the only means of support they have?

We obviously have to keep pushing for more research, but as everybody knows, there is absolutely no effective treatment available now.

 

That's my thoughts on it too. See how confusing that would be to somehow build a legal framework around all of this?

 

Can't. Too hard. Got worse.

 

I'm coming up year 3 in a few weeks and I still pretty well suffer @ the same level. I am sleeping less then I was a few months back. So I could say it got worse but mine goes up & down.

 

That seems to be your perception of the world. I don't know about the ten year waiting period of applying for grants for the biological sciences as opposed to psychology students. It would make sense that an authority of a certain age would start up some research and gathering younger students as part of the team, rather than someone fresh out of med school striking gold and finding a cure all by him or herself.

Of course anything can happen really but I think the fundamentals of scientific research are there for a reason. It's to make sure researchers communicate and conduct proper research by being held accountable for what they publish. (It won't even get published if the research is flawed).

All tinnitus research in biological sciences still use THI as a means of assessing effectiveness. That's a psychological questionnaire...
Lenire used MML too and that makes us none the wiser. People with lowered MML report just as much distress and some where MML stayed the same report relief.

Also, people don't learn as well when stressed. I can image future treatments based on neuroplasticity working better when you aren't in a hell of a lot of distress. That's where psychology could be helpful as a complimentary tool. Really, there's no turf war between psychologists and biological sciences.

 

Hi @Daniel Lion,

Sorry for not understanding but are you saying that you have had the above surgeries, or are these surgeries that you are potentially interested in should things get too much in the future?

I had genuinely never heard of either of them before, and wondered about their efficacy.

Also, thank you for so many kind posts on the forum -- I see that you go out of your way to help others even though you are struggling yourself.

 

For the first one see here:

https://www.earsinus.com/inventions-procedures

Deep brain stimulation is a treatment for Parkinson's disease and essential tremor. Electrodes are implanted into the brain through which electricity then flows into the brain. This is used to "mute" the hyperactive regions associated with aforementioned diseases. The reduction in symptoms is usually around 50% I believe. It has been shown that deep brain stimulation does also work for tinnitus for the same reason (I totally forgot that it was an option...). However, this is something that should be considered as a last resort since the surgeons will handle your brain WITHOUT ANESTHESIA. You have to give feedback if the electrodes are in the correct place (checking whether it does reduce tinnitus or not or if you get other symptoms because it's in the wrong place).

 

Every disease is just a flowchart towards CBT and benzos.

 

Meet the father of modern psychology, that inspired CBT, TRT and ACT. B.F fucking skinner.

Denied the existence of free will and called consciousness an illusion.

Skinner - Free Will

Conversation with B. F. Skinner (1972)

His literature promised utopia, and it only brought us bullshit.

 

these are all problems that have to do with behavior, not physical or biological technology - B.F Skinner

 

I'm in Europe. It's fucking impossible to get benzos for tinnitus. Whenever I mention them, whether to my ENT or my GP, they look at me like I just asked them for some heroin and assure me they won't prescribe that. And that was when I pretty much admitted I had suicidal ideation.

Some clinics prescribe Rivotril (Clonazepam) + Deanxit because there was a study that showed some favorable effects. Now it's mostly out of fashion.

 

Thanks @Sevv!

The first treatment looks like it could be interesting for people with severe Hyperacusis -- I wonder if anyone here has tried it/enquired about it. Good to know about anyway.

The second one -- eeek! That definitely sounds like a last resort. Interesting to see that the Parkinson's link is present again -- I believe Parkinson's medication has been shown to have an effect on Tinnitus in some cases.

 

Hi Tanni, thanks for the kind words.

I haven’t had these surgeries but found them super interesting.

Check out, round window reinforcement surgery at the Silverstein institute in Sarasota Florida. That’s for hyperacusis. I don’t know if the doctor is still alive, but I do consider him a genius. He was a surgeon and taught otolaryngology at Harvard. Last I checked 80 percent success rate and getting better at NIS clinical trials. It’s all very transparent. A surgery that reduces play in the stapes and round window. A surgical answer to extreme hypercusis. There are discussions about it, pros and cons, on the hyperacusis category as well. There was discussion of it here on one of the hyperacusis threads.

The deep brain surgery at USF is what it is... hard core. You are correct with the Parkinson's link.

Take care Tanni.

 

That’s ridiculous. They are absolutely a go to drug for tinnitus. You may have to present cases where doctors prescribe it, sadly. Enter Dr. Shullman in search here... some forum members have had great experiences with this guy. Perhaps he could write something on your behalf. I accidentally googled tinnitus yesterday, pressed the wrong button and Valium was mentioned as standard protocol.
Fight for it. Sorry the doctors are being moronic.