Suicidal

[CT84]

Dear CT
Please read my recent post recommending
Eckhart Tolle's book 'Stillness Speaks.'
Don't worry about the noise just now.
There is a place of stillness for all of us,
underneath the pain, underneath the noise.
I promise you.
As you settle down to meditate, with gentle 'tummy' breathing, lips closed, teeth always apart, just accept the moment exactly as it is, and stillness will come to you, with practice.
Take care
Dave x
Jazzer

Thank you x

 

[Juan]

Hi @Orions Pain,

I've seen some of your posts and I just wanted to say that I'm really sorry for what you're going through.

I suffer/suffered from some of the symptoms you experience. I had Hyperacusis so bad that I couldn't attend any meetings at work because listening to people's voices was so painful it burned, and my colleague had to take over my paperwork because I couldn't handle the sound of turning paper. Someone once began eating crisps over 6 feet away from my desk and I had to walk away because the sound was agony.

I went to TRT and was given WNG's to desensitise my ears, but I had to take them off after 5 minutes because even that small sound in my ear was unbearable.

I remembered that before I had Hyperacusis I had seen a lot of success stories on this forum that implied that it would diminish in time, so I resolved to stay away from the forum to avoid potential negative stories, and keep these success stories in my mind instead.

I also remembered that people had advised not to overprotect, so I resolved never to do so for 'normal' sounds, even though it hurt. When people came to speak to me, their voices burned but I tried hard not to flinch. Same when people would pick up car keys or clink cutlery. Even though my TV hurt my ears at a normal volume, I did not turn it down. Of course, I did protect with earplugs around 'loud' sounds, as normal, but not for everyday sounds.

I'm not sure if that is good advice or not, but all I know is that very slowly the sound sensitivity went away completely and has not been an issue since.

I also developed shooting, burning nerve pain in my hands, arms, legs, feet and mouth (maybe similar to your burning pain?). I was even sent to a neurologist. The doctors now believe it was psychosomatic - brought on by stress. I don't know whether that is true or not, but the pain eventually went away and has not come back so far. (I was also put on a low dose of Amitriptyline, which seemed to help.)

I don't know if any of this helps at all, but I just wanted you to know that it is possible for symptoms to resolve. I am an incredibly anxious, fearful person who always thinks the worst, but I tried my hardest to carry on as normal despite the crippling anxiety, and I think this helped. I hope that your symptoms will abate/resolve soon.

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

 

[acute]

I don't know how to survive to tinnitus.

 

[Orions Pain]

Hi @Orions Pain,

I've seen some of your posts and I just wanted to say that I'm really sorry for what you're going through.

I suffer/suffered from some of the symptoms you experience. I had Hyperacusis so bad that I couldn't attend any meetings at work because listening to people's voices was so painful it burned, and my colleague had to take over my paperwork because I couldn't handle the sound of turning paper. Someone once began eating crisps over 6 feet away from my desk and I had to walk away because the sound was agony.

I went to TRT and was given WNG's to desensitise my ears, but I had to take them off after 5 minutes because even that small sound in my ear was unbearable.

I remembered that before I had Hyperacusis I had seen a lot of success stories on this forum that implied that it would diminish in time, so I resolved to stay away from the forum to avoid potential negative stories, and keep these success stories in my mind instead.

I also remembered that people had advised not to overprotect, so I resolved never to do so for 'normal' sounds, even though it hurt. When people came to speak to me, their voices burned but I tried hard not to flinch. Same when people would pick up car keys or clink cutlery. Even though my TV hurt my ears at a normal volume, I did not turn it down. Of course, I did protect with earplugs around 'loud' sounds, as normal, but not for everyday sounds.

I'm not sure if that is good advice or not, but all I know is that very slowly the sound sensitivity went away completely and has not been an issue since.

I also developed shooting, burning nerve pain in my hands, arms, legs, feet and mouth (maybe similar to your burning pain?). I was even sent to a neurologist. The doctors now believe it was psychosomatic - brought on by stress. I don't know whether that is true or not, but the pain eventually went away and has not come back so far. (I was also put on a low dose of Amitriptyline, which seemed to help.)

I don't know if any of this helps at all, but I just wanted you to know that it is possible for symptoms to resolve. I am an incredibly anxious, fearful person who always thinks the worst, but I tried my hardest to carry on as normal despite the crippling anxiety, and I think this helped. I hope that your symptoms will abate/resolve soon.

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?

 

[Jazzer]

It did squat for me...

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

 

[Tanni]

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

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.

 

[Jazzer]

I don't know. From what I can tell from my experience with the medical community, they are trying to help in the best way they can. With psychologists, that's using psychology.
The people I've come in contact with agreed that they can only do so much and that a cure would be better still. But let's face it, we haven't got one. And the hospital needs some sort of treatment now because they keep seeing people with tinnitus every day.

There's no secret conspiracy. In fact, they are very aware that what they're doing is just trying to relieve some of the comorbid symptoms that come with tinnitus. For a lot of sufferers that may actually be helpful. Especially for people new to this shit. They're bound to react strongly. I know I did when I first got tinnitus. What I would do now to have that level of tinnitus again. It would be as good as a cure.

We can't expect the psychiatrists or psychologists to stand up for our cause. We have to do it ourselves. They're seeing ten people a day. The majority of them do learn to deal with their tinnitus, so when the psych goes home, he or she may spare a thought for the case he saw today that couldn't be helped, but at the end of the day, they still guided a lot of people towards meaningful relief. Most people probably don't need any help and recover on their own.

I'm in no way stating that this should be enough. We do need a cure. Badly. Especially the severe sufferers. We can be cross that too much money went towards research on TRT back in the day but that's in the past. Most scientists are aware we need to direct the meagre funding towards a cure now.

All I'm trying to say is that we won't move forward by bashing the medical community whether it's audiologists or psychologists or ENT's or whatnot. Most of them agree more needs to be done. We're not going to get any compassion by being hostile. Raising awareness and getting our point across in an open and straightforward way will achieve much more.

Even the BTA and ATA are making a shift in BTA featured Steve's story this year. It was the best! That's a wholly different thing compared to William Shatner a decade ago talking about how the ATA was "a ray of light that burst into his life" and how TRT helped him tremendously and saved him from topping himself. (Which may actually be the case). I think the days of unbridled positivity and "we shall overcome" are done. We need realism and it's starting to happen.

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.

 

[Tanni]

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?

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.

 

[bobvann]

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

I did it for quite a while.

 

[PeteJ]

For the the past 10 months, I've been unable to leave my house, work, talk, whisper, exercise. Every. Single. Noise. Bothers me. A large part of the time, I can't tolerate typing on a keyboard or writing with a pencil -- with earplugs and earmuffs in. Whispering for a few seconds gives me a massive headache and I have to stop. I have roaring tinnitus most of the time. I've had suicidal thoughts almost every day and have cried hundreds of times. And, I have less reason to be optimistic since my problem is caused by my immune system attack my inner ear, it's very unlikely that these new drugs will cure me. Is that enough suffering?

This has nothing to do with anything other than a conversation about ethics. Some people are committed to guiding people through suicide, while others are not. My ethics are that I cannot recommend suicide to someone on the internet, and I never will.

I fail to see why Tinnitus Talk should be the place to set up suicide, a medical procedure. Overwhelmingly, people talk about suicide on here as a way to vent, and ultimately, not commit suicide. Actual plans, dates, and methods is not for me.

I want to tell you a story that has shaped my opinion. At my worst, I had relentless suicidal thoughts. Months later, I started to have a mini-recovery and was so thankful I kept fighting. Granted, I ended up backsliding again, etc., but I got a taste of what a recovery might look like.

At the time, I thought there was no way I could ever have even a small recovery. But I did. Will you have recoveries? I don't know. But I don't want to be the person that shoved someone over the edge when some good news was around the corner.

Also, five years ago, my disease gave me debilitating chronic pain -- also had suicidal thoughts. After I pushed through, I was so glad I did.

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.

 

[PeteJ]

With FX-322, they saw ear cells regenerating in the cochlea taken from a cancer patient, and they saw synapses attaching to the ear cells. This should take care of tinnitus due to hidden hearing loss and ear cells/synapses damage. In larger doses it should also repair low frequencies. It's a question whether the tinnitus will improve or not but we can be positive about it.
If the problem is the synapses, there is a synapthopaty drug OTO-413 in trials, but we don't know if it works. We only have hints for FX-322 that it works.

We also have neuromodulation, hopefully Susan Shore's device comes out soon and gives us a little relief. Although it's not clear to me how it can help someone like me who has been having constant worsening almost weekly. Maybe it will stop this trend or even revert it, who knows.

You say you have been on Xanax for a number of weeks. Do you notice a rebound effect when you stop taking Xanax, and between doses? If it worsened in a measurable way since you started the drug it might be slightly worsening it. Yet we need to sleep, I agree. When I tapered off Clonazepam quickly after 3 weeks I couldn't sleep and the tinnitus went mad. I am now tapering slowly but it's still very very challenging. Sleep is our only break and if we lose sleep probably we will be in a critical situation. Not that i sleep well, but at least I sleep a few agitated hours per night.

What could we take? I have tried melatonin, it works a little but not too well, lavender pills, that are natural calcium channel blockers, I tried tryptophan, I tried valerian but we should be careful with that while on benzos since it is a gaba agonist. I think anti-histamines work for me but after a while you get addicted to those too and their effect on tinnitus is uncertain. Some people take amitryptiline but again effect on tinnitus is uncertain. Others try quetiapine, although at a low dose that is mostly a anti-histamine and anticholinergic drug. We do have some options but it's not clear what to try. Benzos and Z-drugs can give dependence rather quickly so we should try not to stay on them too long, although there are people who are stable on benzos and got a good quality of life on them.

It's fiction and fantasy.

 

[PeteJ]

Same boat. I have serious hearing loss, loud relentless tinnitus that does not mask and have hyperacusis that's not destroying me now, but was so bad some time ago I had to quit my job and couldn't handle a fork touching a plate... still can't handle that sound and anything slightly loud. I woke up one morning and felt a stabbing pain into my brain... I couldn't sleep when the tinnitus hit and took benzos for the first time in my life. I self prescribed and was doing 60 to 90 milligrams of valium a day. I can buy them up the street for a couple dollars. I didn't know you can't just stop taking the things. I learned the hard way as I was having delirious hallucinations. I read up on tapering and Dr. Ashton, and kicked the blues to the curb.

I am clean now and lucky my condition lets me exercise. I fucking push myself so hard and fight like a possessed demon to turn my life into something new and deal with undoing the brain damage.

I no longer feel suicidal but know that with one accident I will be joining Allan. It's weird to claim or identify with a thread or space on this forum, but I feel everyone here is my family. We suffer beyond most people's comprehension. I am going to continue to fight everyday and pray and hope that people on the suicide thread can have a little luck, that glimmer of light... that small lessening of their pain so that they can have real hope and even perhaps a smile, a laugh, a hug... a bit of joy. Same boat brother James.

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.

 

[Autumnly]

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.

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.

 

[Bartoli]

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.

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

 

[Daniel Lion]

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.

 

[ajc]

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.

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/

 

[Jazzer]

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.

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.

 

[Bartoli]

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.

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

 

[Lena231292]

Can't. Too hard. Got worse.

 

[bobvann]

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.

 

[Bartoli]

They get to lobby for clinical grants straight outta pysch school.

A biomedicine/engineer student will need a extra decade of schooling and a decade of peer to peer research before his/her treatment can start a clinical trial which takes another decade. I don't want to live in a world where psychology thrives off the ignorance of the biological sciences and that is the world I live in.

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.

 

[Tanni]

hyperacusis round window surgery or deep brain stimulation for my tinnitus.

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.

 

[Sevv]

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).

 

[Contrast]

Every disease is just a flowchart towards CBT and benzos.

 

[Contrast]

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.





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

 

[Contrast]

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

 

[Bartoli]

Every disease is just a flowchart towards CBT and benzos.

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.

 

[Tanni]

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).

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.

 

[Daniel Lion]

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.

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.

 

[Daniel Lion]

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.

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.