Suicidal

[Uklawyer]

I am in France. My wife is French. I moved out here when her mum was diagnosed with cancer.

 

[AliasM]

Tinnitus has been screaming at me for 3 months and not easing off.

What hope is there when the reason for this is likely maladaptive brain changes for which they don't understand and there is no cure?

I can't take it anymore. I am trying so hard to habituate but at this level of noise off over my brain with multiple different sounds that change from one hour to the next I am so tired, and so defeated.

 

[Uklawyer]

Doctors upped my antidepressant and sedated me on Valium 4 times a day here in the hospital. Good for wanting to sleep and feeling half dead. Not sure about the other benefits.

 

[__nico__]

I'm making the tough decision to order an MRI with contrast.

Obviously with hyperacusis I've put this off very long because I do not want the MRI to worsen me.

But ever since getting "hyperacusis" and the visual and vestibular problems that popped up afterwards, numerous other debilitating and crippling health problems are showing up left and right.

To put it mildly my entire body is failing and many decent doctors are suspecting cancer.

I hope that even if the MRI permanently worsens me at least they find something and, maybe my "hyperacusis" is connected to it.

 

[Uklawyer]

Take s*loads of Valium. That provides temporary relief. Anyone had problems on it?

 

[DreiT]

Take s*loads of Valium. That provides temporary relief. Anyone had problems on it?

Valium caused my tinnitus. I used it for insomnia for only 3 weeks and cold turkeyed. I did not know about withdrawal. My insomnia became worse and the tinnitus happened when I drank caffeine. My GABA receptors were probably destroyed and the caffeine triggered the tinnitus to happen.

 

[__nico__]

Take s*loads of Valium. That provides temporary relief. Anyone had problems on it?

It'll suck when you hit tolerance. Or when you have protracted withdrawal.

 

[DaveFromChicago]

To __nico__:

I am very impressed with your Avatar Choice of Francis Bacon's Screaming Pope. I am envious that I did not think how spot-on germane his nightmarish paintings are to this condition.

Last Tuesday I had a day-long spike that made me feel exactly like this figure.

 

[shelbynn]

I'm so tired of suffering ya'll.

Is there any assisted suicide available in the United States?

 

[AliasM]

Valium caused my tinnitus. I used it for insomnia for only 3 weeks and cold turkeyed. I did not know about withdrawal. My insomnia became worse and the tinnitus happened when I drank caffeine. My GABA receptors were probably destroyed and the caffeine triggered the tinnitus to happen.

What dose were you on for that 3 weeks?

 

[Uklawyer]

And what other options are there?

 

[PeteJ]

Thanks @Uklawyer.

First of all just time, I believe that's the key component. And support network, my parents and friends, I'm blessed with those. Then:

- reading lots of success stories here, over and over;
- tried all kinds of supplements for anxiety, I found Tibetan herbs working for me, but that may be my personal experience;
- tried benzos and Quetiapine and wish I never touched that stuff. Clonazepam nearly did me in and Quetiapine spiked up my tinnitus like crazy. Neither of them calmed me down actually;
- Mirtazapine for sleep;
- from what I've read, you are very early on, so you have to acknowledge it through this period;
- I seek inspiration in people who deal with massive health adversities. There's a few books that helped me, one very good book is by Mike Knight, called Tinnitus: From Suicide, Acceptance to Happiness. I read it a few times during the darkest days, definitely recommend it;
- there are lots of celebrities who have tinnitus. Apart from a few well known cases, I read that Nigel Farage has tinnitus from a head trauma in his 20s. Now, I may not agree with his political views, but he did achieve some things in life despite the ringing.

Probably minor tinnitus though? I can't imagine anyone doing what he did with severe tinnitus.

Anyone who has severe and loud tinnitus worse than any ear pain and hyperacusis despite the two latter conditions being pretty serious?

I find it difficult to believe any of the researchers can treat that. Since, there never seems to be updates or leaks of "breakthroughs" or "advances," I assume that's the case still.

 

[Uklawyer]

How good is that Mike Knight book? And did I ask what Chinese herbs you were taking?

Has the tinnitus gone down a bit with the implementation of these strategies?

I might need Mirtazapine for sleep at some point.

 

[Johan001]

I liked the book, it is a good read. He said he had mild tinnitus for years until the severe one hit him and he nearly killed himself, then it took him ages to adapt. In his case cardio exercise was the key and the diet. To me it was another well written success story.

I take Tibetan herbs, agar 35 and srog dzin 11. My tinnitus has not really gone down, it kind of stabilised. The biggest milestone was that I could sleep a bit better.

I'm still suffering badly and my tinnitus is multi-tonal and quite severe. I'm 9 months in, so I still hope to achieve some sort of habituation. Unfortunately I'm very far from being a success story yet...

 

[Lasse S]

Anyone who has severe and loud tinnitus worse than any ear pain and hyperacusis despite the two latter conditions being pretty serious?

I find it difficult to believe any of the researchers can treat that. Since, there never seems to be updates or leaks of "breakthroughs" or "advances," I assume that's the case still.

Yes. I do have severe hyperacusis loudness and noxacusis, but I can handle that much better than my catastrophic tinnitus.

I can't leave my home, can't work, can't really do any of the things I want to. I still hope for a breakthrough in the future, but right now not much to look forward to.
Right now I just hope the breakthrough will come faster than my tinnitus worsening to the point where I just can't take it anymore, but that's probably not realistic the way things are going.

The day I lose hope for the future is probably the day I'll say goodbye to this life.

 

[__nico__]

I'm so tired of suffering ya'll.

Is there any assisted suicide available in the United States?

Only some states have it.

I really understand your struggle though. Give your condition a few more months at least.

 

[PeteJ]

I'm making the tough decision to order an MRI with contrast.

Obviously with hyperacusis I've put this off very long because I do not want the MRI to worsen me.

But ever since getting "hyperacusis" and the visual and vestibular problems that popped up afterwards, numerous other debilitating and crippling health problems are showing up left and right.

To put it mildly my entire body is failing and many decent doctors are suspecting cancer.

I hope that even if the MRI permanently worsens me at least they find something and, maybe my "hyperacusis" is connected to it.

I don't think an MRI is worth it. I think the probability that acoustic neuroma or something of that nature shows up is extremely low. Correct me if I am wrong, though.

Yes. I do have severe hyperacusis loudness and noxacusis, but I can handle that much better than my catastrophic tinnitus.

I can't leave my home, can't work, can't really do any of the things I want to. I still hope for a breakthrough in the future, but right now not much to look forward to.
Right now I just hope the breakthrough will come faster than my tinnitus worsening to the point where I just can't take it anymore, but that's probably not realistic the way things are going.

The day I lose hope for the future is probably the day I'll say goodbye to this life.

Can I ask how old you are?

You can't leave home because of your hyperacusis or because of everything?

I hate having to go anywhere but I have no choice. My residence is hell. I have some form of hyperacusis and ear pain but my tinnitus is the worst thing. Catastrophic tinnitus? Yeah, that is one way to explain it. I don't know how researchers can treat this? Are they making any progress? Hair cell regeneration? What? I still haven't seen or should I say, read, a recent research paper on how severe tinnitus comes about and how they expect to treat it. Have you? Hope is a dangerous thing to lose. You are right. Once you lose that, it is game over. It is easier for one to act on one's feelings of hopelessness and resignation.

That is sad. I don't know what the solution is. There isn't one right now.

 

[__nico__]

I don't think an MRI is worth it. I think the probability that acoustic neuroma or something of that nature shows up is extremely low. Correct me if I am wrong, though.

No this isn't an acoustic neuroma. It's a possible adrenal tumor, something far more serious.

I had one before, which means I'm susceptible to having it again.

 

[PeteJ]

No this isn't an acoustic neuroma. It's a possible adrenal tumor, something far more serious.

I had one before, which means I'm susceptible to having it again.

Oh okay. That sucks, man. I guess you can wear special ear plugs for it but I would not want to get an MRI. I suppose new/modern (tech wise) aren't as loud but still...

 

[Zugzug]

It's a possible adrenal tumor, something far more serious.

I had one before, which means I'm susceptible to having it again.

FYI (you definitely may know all of this stuff):

The adrenal glands are highly important when it comes to immune function. Steroids turn the adrenal glands off, filling the body with synthetic cortisol. This all suppresses the immune system.

I know you said that when you went off Prednisone, you developed issues. Typically, the adrenal glands take time to start producing enough natural cortisol again. If you had an adrenal tumor before, it wouldn't surprise me if it's somehow connected to your rare, adverse reaction to stopping steroids.

 

[__nico__]

FYI (you definitely may know all of this stuff):

The adrenal glands are highly important when it comes to immune function. Steroids turn the adrenal glands off, filling the body with synthetic cortisol. This all suppresses the immune system.

I know you said that when you went off Prednisone, you developed issues. Typically, the adrenal glands take time to start producing enough natural cortisol again. If you had an adrenal tumor before, it wouldn't surprise me if it's somehow connected to your rare, adverse reaction to stopping steroids.

Yeah. When I had an adrenal tumor in 2003 I literally had to have one of the adrenal glands surgically removed. So with the shock that did to my body, I had serious fucking health problems (and hearing loss from chemo) for several years afterwards. My childhood was not fun. Things stabilized for most of the 2010s, until my once livable tinnitus ramped up, prompting me to get steroids out of desperation. I should have never taken them, but I was stupid to anyway, and now bam I have hyperacusis, balance problems, vision problems, anhedonia and all sorts of other stuff.

I recently had bloodwork done which showed I have extremely abnormally high cortisol levels but my body is resistant to it. Which puts me in a tough place and is totally autoimmune. Ironically the cortisol may be keeping inflammation in check but my body is resistant and adversely reacting to it in every possible way, MUCH beyond my hearing issues. It's probably causing hydrops, which is what I was told by a specialist.

So I'm in a tough spot. Taking steroids stops cortisol and inflammation but coming off them will make me worse long term. It's like I'm being held at gunpoint 24/7.

I have a lot of pitch shift and broken speaker/esque distortion and seashell sounds a la Meniere's and low frequency loss, which totally destroyed music, my favorite thing ever. And I have catastrophically low "LDLs" but mainly for high pitched or sudden impulse sounds.

And this shit only started AFTER my first course of Prednisone, which made me join this site. I went on a second course, stupidly, lo and behold was basically almost cured, and once coming off them, a Hell I never knew existed began.

 

[Zugzug]

Yeah. When I had a neuroblastoma in 2003 I literally had to have one of the adrenal glands surgically removed. So with the shock that did to my body, I had serious fucking health problems (and hearing loss from chemo) for several years afterwards. My childhood was not fun. Things stabilized for most of the 2010s, until my once livable tinnitus ramped up, prompting me to get steroids out of desperation. I should have never taken them, but I was stupid to anyway, and now bam I have hyperacusis, balance problems, vision problems, anhedonia and all sorts of other stuff.

I recently had bloodwork done which showed I have extremely abnormally high cortisol levels but my body is resistant to it. Which puts me in a tough place and is totally autoimmune. Ironically the cortisol may be keeping inflammation in check but my body is resistant and adversely reacting to it in every possible way, MUCH beyond my hearing issues. It's probably causing hydrops, which is what I was told by a specialist.

So I'm in a tough spot. Taking steroids stops cortisol and inflammation but coming off them will make me worse long term. It's like I'm being held at gunpoint 24/7.

I have a lot of pitch shift and broken speaker/esque distortion and seashell sounds a la Menieres and low frequency loss, which totally destroyed music, my favorite thing ever. And I have catastrophically low "LDLs" but mainly for high pitched or sudden impulse sounds.

And this shit only started AFTER my first course of Prednisone, which made me join this site. I went on a second course, stupidly, lo and behold was basically almost cured, and once coming off them, a Hell I never knew existed began.

Wow, that sounds absolutely horrible, my friend. The most adversity I dealt with in childhood was breaking my arm multiple times (for not even cool reasons). I got hit in my 20s with some rude awakenings.

I'm really surprised that you have high cortisol levels with only one adrenal gland and just getting off steroids. I would think you would have the opposite problem. I've never heard of someone developing hyperacusis after getting off steroids -- it sounds like you have a rare situation. I wonder, do you have to take certain meds because of having one adrenal gland? Is it enlarged to compensate? I was born with one kidney and it ended up enlarging to cover more ground.

 

[FGG]

Yeah. When I had an adrenal tumor in 2003 I literally had to have one of the adrenal glands surgically removed. So with the shock that did to my body, I had serious fucking health problems (and hearing loss from chemo) for several years afterwards. My childhood was not fun. Things stabilized for most of the 2010s, until my once livable tinnitus ramped up, prompting me to get steroids out of desperation. I should have never taken them, but I was stupid to anyway, and now bam I have hyperacusis, balance problems, vision problems, anhedonia and all sorts of other stuff.

I recently had bloodwork done which showed I have extremely abnormally high cortisol levels but my body is resistant to it. Which puts me in a tough place and is totally autoimmune. Ironically the cortisol may be keeping inflammation in check but my body is resistant and adversely reacting to it in every possible way, MUCH beyond my hearing issues. It's probably causing hydrops, which is what I was told by a specialist.

So I'm in a tough spot. Taking steroids stops cortisol and inflammation but coming off them will make me worse long term. It's like I'm being held at gunpoint 24/7.

I have a lot of pitch shift and broken speaker/esque distortion and seashell sounds a la Meniere's and low frequency loss, which totally destroyed music, my favorite thing ever. And I have catastrophically low "LDLs" but mainly for high pitched or sudden impulse sounds.

And this shit only started AFTER my first course of Prednisone, which made me join this site. I went on a second course, stupidly, lo and behold was basically almost cured, and once coming off them, a Hell I never knew existed began.

This sounds awful. I'm so sorry.

What about IT steroids? Less systemic absorption. Maybe you could do them more frequently (off label?) for comfort while you get a better work up.

 

[__nico__]

Wow, that sounds absolutely horrible, my friend. The most adversity I dealt with in childhood was breaking my arm multiple times (for not even cool reasons). I got hit in my 20s with some rude awakenings.

I'm really surprised that you have high cortisol levels with only one adrenal gland and just getting off steroids. I would think you would have the opposite problem. I've never heard of someone developing hyperacusis after getting off steroids -- it sounds like you have a rare situation. I wonder, do you have to take certain meds because of having one adrenal gland? Is it enlarged to compensate? I was born with one kidney and it ended up enlarging to cover more ground.

I'm not sure if it's enlarged or not, I had literally just turned 2 years old like a month after it was removed. Perhaps it is... I never thought to ask anyone about that.

It's also been about 2 months since last coming off of steroids, also my ENT hardly made me taper, the dosing schema was as if I quit cold turkey. Twice. I should have done my research but I was desperate. And the funny thing is, it did reduce my tinnitus a lot. But traded it off for hearing problems I didn't know existed and health problems that are so bad suicide is my sole thought.

 

[__nico__]

This sounds awful. I'm so sorry.

What about IT steroids? Less systemic absorption. Maybe you could do them more frequently (off label?) for comfort while you get a better work up.

I'm going to a cancer hospital in about a month, no one here does IT steroids so I'll get them at the hospital I will be going to in a month, which is pretty far away from where I live.

 

[Lasse S]

Can I ask how old you are?

You can't leave home because of your hyperacusis or because of everything?

I hate having to go anywhere but I have no choice. My residence is hell. I have some form of hyperacusis and ear pain but my tinnitus is the worst thing. Catastrophic tinnitus? Yeah, that is one way to explain it.

I'm in my early 30s and I do have two functioning legs, so technically I can leave my home, and I also do that when I have to go see my doctor or stuff like that.

I can't go anywhere without hearing protection because of hyperacusis and noxacusis, unless I want ear pain and ear fullness for the next week or more, and even with hearing protection it's a gamble.

But the big problem is my very severe tinnitus and the way it affects me. I just can't handle it very well.

I don't even know how many different noises I hear. It could be 10 or 20, coming from my ears and entire brain. Some of them pure tones and hissing but many of them are oscillating, chirping, electrical storm and so on and all the noises are very loud. It is much worse now than it was three years ago and it just keeps getting worse.

I don't know how researchers can treat this? Are they making any progress? Hair cell regeneration? What? I still haven't seen or should I say, read, a recent research paper on how severe tinnitus comes about and how they expect to treat it. Have you? Hope is a dangerous thing to lose. You are right. Once you lose that, it is game over. It is easier for one to act on one's feelings of hopelessness and resignation.

That is sad. I don't know what the solution is. There isn't one right now.

No sorry, I think you are right. There is still a lot to learn for researchers before we get a treatment. Maybe some of the hearing regeneration stuff in the pipeline will work on tinnitus, or Ebselen or any of the Retigabine derivatives, but we don't know yet.

 

[DreiT]

What dose were you on for that 3 weeks?

I took only 5 mg of Valium. Were you on a benzo also?

 

[AliasM]

Here I am again, back in the suicide thread, wanting to be dead. This shit is relentless. It is cruel and unusual punishment that assisted dying is only for the terminal, not the tortured and tormented. I can't go on like this. The sounds are layered all over my brain and ears, multiple of them and they NEVER STOP. You can't habituate to this.

 

[Chinmoku]

It is truly a tortured existence. Sorry you are suffering so much @AliasM. I hope at some point our brains have enough and do something to allow us to cope with this horror.

On another note, has anyone heard from @acute recently? I hope she is all right.

 

[Lurius]

has anyone heard from @acute recently? I hope she is all right.

Yeah, I've spoken with her recently.