Suicidal

[Chinmoku]

My wife left me and even though I have a diagnosis, all of my potential disability lawyers are running for the hills. They don't want to touch my case, as they view it as too challenging and therefore, not profitable for them. LOL, cool story bro. #SocialistState

I'm like breaking all of the codes because my situation is so rare. Fun times...

Hats I've had to wear over the past two years: Scientist and my own doctor. What the hell, let's add a law degree...

I'm so sorry... my wife left me too, so I understand. For sure, at the end of this ordeal, if we survive and improve, we'll become renaissance men.

 

[Zugzug]

I'm so sorry... my wife left me too, so I understand. For sure, at the end of this ordeal, if we survive and improve, we'll become renaissance men.

Definitely a person I would like to have a drink with if this all ended for us. I hope some of the drugs in the pipeline can help you.

 

[Chinmoku]

Definitely a person I would like to have a drink with if this all ended for us. I hope some of the drugs in the pipeline can help you.

We are also both mathematicians. We should definitely have a drink if we improve. I hold you in very high esteem. I hope we can find a way to keep on living.

 

[Zugzug]

We are also both mathematicians. We should definitely have a drink if we improve. I hold you in very high esteem. I hope we can find a way to keep on living.

@buttercake is also a mathematician. Would be cool to collaborate someday... my ability is all over the map these days.

 

[Aaron91]

Tinnitus sucks, especially if it's horribly loud, but having bad dysacusis and hyperacusis is a whole new hell. I had everything. Now I lost it. I had to give up the family business because it's too loud for my ears. I lost 20 pounds of muscle, used to be jacked 7 months ago, now a shriveled up stick.

My dysacusis is so damn hard to habituate to. I have a wine glass hum to everything, and a fluttering sound. If I try to workout I develop a new tone of dysacusis on top of the other ones. Last week I almost had silence. I was walking down the street at 1 am, no ringing, no hissing, no fluttering, no terrible distortion. The feeling of silence was absolutely amazing. I can't even explain how happy I felt, I never wanted the moment to end. At least I get silence sometimes, I feel horrible for you guys my age with bad hearing loss and unmaskable tinnitus. My only upside is that I have better hearing than most people on this planet. My ringing sometimes gets very quiet or very loud. It's been 6 months since my distortions and bad hyperacusis started.

Please, anybody help, I have been to so many doctors and ENTs. I don't know what to do. I got the distortions and hyperacusis right after deadlifting 455 at the gym with ear plugs in. Whenever I strain too much my ears get horrible full again and the next day I'm left with a new distortion. I tried a month off the gym, Prednisone, diuretics, Zinc, Magnesium, Lipoflavonoid.

I even ruled out a fistula, got a CT scan, which showed nothing. I'm going to the chiropractor to treat C1 and C2 .They ordered an MRI but I cancelled because of the noise it makes. I can't keep living like this, I'm honestly ready to die. I just wish the worst damage could be done so I could begin to habituate. It just keeps changing. I want my life back so bad. My family thinks I'm lying about my ear problems, they think I'm over exaggerating. I hate them for it.

Any thoughts from anybody? I have gone through every single page on the internet searching for an answer. I still cannot even get a hint from anything.

I understand you feel desperate, but try to be patient. There are a good number of cases who get better from hyperacusis but it can take up to two years. Granted, there are those who don't and those are the ones who you see frequent this forum (those who get better rarely seem to post), but given you're 6 months in you still may be one who improves with time - you won't know though unless you give your body that time.

Honestly, the best thing you can do right now is rest your ears. I wouldn't go to a noisy gym - workout from home, but try and minimise any air or blood pressure to your head that could make things worse. I would actually avoid weights for some time and any kind of exercise that forces blood/pressure towards your skull. If your ears are under a pressure environment, they will be under stress and they will not recover.

Your fluttering suggests that a lot of your symptoms are middle-ear related. This doesn't surprise me given your symptoms seem to have been set off by lifting weights. I honestly think there's some kind of pressure/ED/middle-ear inflammation going on. Like some of us here, I think you could try something like Ambroxol, which can drain the middle-ear of any inflammatory fluid.

Some of us will also be experimenting with the Stamet's stack this month - not just individual components of it as others have done before - and there's good reason to believe that that may help some of us. Stay strong.

 

[Simon85]

My wife left me and even though I have a diagnosis, all of my potential disability lawyers are running for the hills

Sorry to hear this Zugzug. I can only imagine that there is no well trodden path to finding support with a rare condition. I hope future medical advances bring you some relief.

 

[AliasM]

I am truly sorry to hear about your marriage.

 

[Diesel]

My wife left me and even though I have a diagnosis, all of my potential disability lawyers are running for the hills. They don't want to touch my case, as they view it as too challenging and therefore, not profitable for them. LOL, cool story bro. #SocialistState

I'm like breaking all of the codes because my situation is so rare. Fun times...

Hats I've had to wear over the past two years: Scientist and my own doctor. What the hell, let's add a law degree...

Keep your head up my friend. You will get through all of this.

 

[Brian Newman]

I understand you feel desperate, but try to be patient. There are a good number of cases who get better from hyperacusis but it can take up to two years. Granted, there are those who don't and those are the ones who you see frequent this forum (those who get better rarely seem to post), but given you're 6 months in you still may be one who improves with time - you won't know though unless you give your body that time.

Honestly, the best thing you can do right now is rest your ears. I wouldn't go to a noisy gym - workout from home, but try and minimise any air or blood pressure to your head that could make things worse. I would actually avoid weights for some time and any kind of exercise that forces blood/pressure towards your skull. If your ears are under a pressure environment, they will be under stress and they will not recover.

Your fluttering suggests that a lot of your symptoms are middle-ear related. This doesn't surprise me given your symptoms seem to have been set off by lifting weights. I honestly think there's some kind of pressure/ED/middle-ear inflammation going on. Like some of us here, I think you could try something like Ambroxol, which can drain the middle-ear of any inflammatory fluid.

Some of us will also be experimenting with the Stamet's stack this month - not just individual components of it as others have done before - and there's good reason to believe that that may help some of us. Stay strong.

Thanks. I really appreciate your input. I was slowly getting better. I keep getting setbacks with sounds that usually don't happen. I'm just wearing earplugs everywhere.

 

[Matchbox]

I have been taking Xanax once a week for 8 months and it's the same as ever.

I think I must be unlucky then. It stops working quickly and the moment I'm off, if I try one 0.5 mg dose of Clonazepam, I have to deal with extra thumping noises for at least 3 days.

I'd love to do benzo vacations but the last spike after it wore off was so bad I had to call into work which doesn't look good when you work remotely.

 

[roy1159]

I have been feeling detached from normal life for many months now.

Now I'm feeling detached from my body and brain - both deteriorated beyond repair.

I can't wait to undergo the surgery next week so I can finally end this nightmare and life, as relief due to the surgery is not probable. I will be stuck being hard of hearing anyway so I'll have to end it no matter what.

People should enjoy their lives as there is no way knowing what's around the corner - your life can go from 100 to zero in a matter of months, no matter what you have achieved or had - it was all a simulation.

 

[ajc]

I have been feeling detached from normal life for many months now.

Now I'm feeling detached from my body and brain - both deteriorated beyond repair.

I can't wait to undergo the surgery next week so I can finally end this nightmare and life, as relief due to the surgery is not probable. I will be stuck being hard of hearing anyway so I'll have to end it no matter what.

People should enjoy their lives as there is no way knowing what's around the corner - your life can go from 100 to zero in a matter of months, no matter what you have achieved or had - it was all a simulation.

Please try Clonazepam + Gabapentin combination. Helps some people here.

 

[Sironketchup]

My girl also left me because I see no future for me, getting kids etc...

I feel your pain. If I get rich with crypto, you are all welcome to the party.

 

[Aaron91]

My wife left me and even though I have a diagnosis, all of my potential disability lawyers are running for the hills. They don't want to touch my case, as they view it as too challenging and therefore, not profitable for them. LOL, cool story bro. #SocialistState

I'm like breaking all of the codes because my situation is so rare. Fun times...

Hats I've had to wear over the past two years: Scientist and my own doctor. What the hell, let's add a law degree...

I'm very sorry to hear this, Zugzug. The wider emotional and social consequences of hyperacusis are beyond devastating. I'm at my wits' end and my condition is not as bad as yours. We need solutions and soon.

 

[Zugzug]

I'm very sorry to hear this, Zugzug. The wider emotional and social consequences of hyperacusis are beyond devastating. I'm at my wits' end and my condition is not as bad as yours. We need solutions and soon.

Thanks, Aaron. Hyperacusis really is a POS. I will be severely traumatized for life, no matter what. I'm sure you will too. I take solace in the fact that God has a plan for me, which probably includes torturing me harder.

 

[Aaron91]

Thanks, Aaron. Hyperacusis really is a POS. I will be severely traumatized for life, no matter what. I'm sure you will too. I take solace in the fact that God has a plan for me, which probably includes torturing me harder.

I have always admired your ability to maintain a sense of humour throughout. If we ever both get through this, I'll take you for a beer one day.

 

[Zugzug]

I have always admired your ability to maintain a sense of humour throughout. If we ever both get through this, I'll take you for a beer one day.

Oh, I'm laughing. That's for sure. You can join @Chinmoku and I (and others) when we have that coveted beer, where we can drink ourselves silly and cry about how much of our lives were destroyed.

 

[Daniel Lion]

My brain is toast. That's why I don't write much these days.
But I had a vision I would like to share with my brothers and sisters who frequent this thread.

When and if I am able to resettle in the United States, I would like to get some land somewhere in New England, maybe in New Hampshire tucked away in the White Mountains.

This land will have private cabins where my friends who suffer from debilitating tinnitus and hyperacusis can come to live (for free) and die in peace when that time comes. Holistic living, sauna, walks, massage, benzos, meds, cannabis and whatever a sufferer needed is fine. The management suffers, understands, and passes no judgement. Noise and aggression issues won't be an issue and no demands will be made, except for being somewhat polite; being happy is not a demand but if one feel happiness then that's a blessing and may lead to feeling it more.
A safe place for sufferers with bad tinnitus and hyperacusis.

I would like to do this for us either in the United States or in my present local. I have created a space like I mentioned above but it's too small. Its cheaper to do here in Laos... I digress. I am going to need a few years unless I hit the lottery. I will keep you guys posted.

Sending love to my Pals here. I really do think of you guys all the time, my fellow sufferers of a most viscous condition.

Peace.

 

[Lukee]

I had an appointment with an ND recommended to me by a friend. As I'm sure everyone here has been through it, my friend encouraged the appointment thinking that an ND could solve the problems that traditional medicine couldn't. I'm not against NDs or naturopathic medicine, it has its place in treatment and I have been doing vitamin drips the last couple weeks to help with any deficiency and inflammation. As a favor to my friend and obligation to the doctor I went ahead and saw him. Super nice guy and wasn't peddling the usual buy my vitamins talk, I could tell he was being sincere. Halfway through our appointment he stopped me mid sentence and said, "I have to be honest, I don't really think I can help you. I don't think any vitamin or diet will fix you but you never know that it could ease some symptoms and help you recover faster. But that's not what you want to hear and I know that." For a few seconds I actually didn't know what to say. I sat there blankly, thinking, is this a sales tactic for me to beg for his help because if it is, it's working. I went in with no expectations and a slight chip on my shoulder, though I didn't convey that attitude. At this point I wanted to continue to describe my issue and get his input but he said he couldn't help. Was this sales 101? So instead I said "ok, I appreciate your honesty."

He continued, "I had a patient once, kind of a wreck like you. Lots of issues presenting concurrently. She had an ear issue as well. Hearing loss and tinnitus and sounds were messed up. Her husband took her to a doctor in the US. She was given a few different treatments over 3 months but eventually it was found that she had an autoimmune condition that also caused her hearing loss and ear problems. They gave her some treatment and she came back 99% better."

He told me that the only three treatments that worked were IVIG therapy, stem cells or PRP (I think this was actually Regenokine) and LDN. When he told me this, I was thinking instantly about @roy1159. The hearing loss, distortions and tinnitus for a young woman with no other triggers made me think that @roy1159 has an autoimmune issue as his presentation looks similar to this case. I don't know if this info can help at all and I haven't read your posts extensively, but if it is, maybe some therapy to help CNS or autoimmune diseases could help you. Roy, have you had an inner ear MRI? Has autoimmune been ruled out? Hope this info can help in some way.

 

[FGG]

My brain is toast. That's why I don't write much these days.
But I had a vision I would like to share with my brothers and sisters who frequent this thread.

When and if I am able to resettle in the United States, I would like to get some land somewhere in New England, maybe in New Hampshire tucked away in the White Mountains.

This land will have private cabins where my friends who suffer from debilitating tinnitus and hyperacusis can come to live (for free) and die in peace when that time comes. Holistic living, sauna, walks, massage, benzos, meds, cannabis and whatever a sufferer needed is fine. The management suffers, understands, and passes no judgement. Noise and aggression issues won't be an issue and no demands will be made, except for being somewhat polite; being happy is not a demand but if one feel happiness then that's a blessing and may lead to feeling it more.
A safe place for sufferers with bad tinnitus and hyperacusis.

I would like to do this for us either in the United States or in my present local. I have created a space like I mentioned above but it's too small. Its cheaper to do here in Laos... I digress. I am going to need a few years unless I hit the lottery. I will keep you guys posted.

Sending love to my Pals here. I really do think of you guys all the time, my fellow sufferers of a most viscous condition.

Peace.

I have thought of something similar in the Arkansas Ozarks, remote and relatively cheap. It's something I have considered if I have to sell my house but you are a lot more likely to be able to do this than me (I'm guessing). I would join you in a second. Any peace is so hard to come by...

 

[Zugzug]

My brain is toast. That's why I don't write much these days.
But I had a vision I would like to share with my brothers and sisters who frequent this thread.

When and if I am able to resettle in the United States, I would like to get some land somewhere in New England, maybe in New Hampshire tucked away in the White Mountains.

This land will have private cabins where my friends who suffer from debilitating tinnitus and hyperacusis can come to live (for free) and die in peace when that time comes. Holistic living, sauna, walks, massage, benzos, meds, cannabis and whatever a sufferer needed is fine. The management suffers, understands, and passes no judgement. Noise and aggression issues won't be an issue and no demands will be made, except for being somewhat polite; being happy is not a demand but if one feel happiness then that's a blessing and may lead to feeling it more.
A safe place for sufferers with bad tinnitus and hyperacusis.

I would like to do this for us either in the United States or in my present local. I have created a space like I mentioned above but it's too small. Its cheaper to do here in Laos... I digress. I am going to need a few years unless I hit the lottery. I will keep you guys posted.

Sending love to my Pals here. I really do think of you guys all the time, my fellow sufferers of a most viscous condition.

Peace.

I have thought of something similar in the Arkansas Ozarks, remote and relatively cheap. It's something I have considered if I have to sell my house but you are a lot more likely to be able to do this than me (I'm guessing). I would join you in a second. Any peace is so hard to come by...

Yes, let's make it happen. Hyperacusis world.

 

[Hamsti]

I hope every day for cancer.

I had chest pain the other night. Didn't go to hospital and I figured it was finally my time yet here I am.

Been there. Not cancer. I don't want to suffer more than I already do.

 

[Óscar PP]

I have been feeling detached from normal life for many months now.

Now I'm feeling detached from my body and brain - both deteriorated beyond repair.

I can't wait to undergo the surgery next week so I can finally end this nightmare and life, as relief due to the surgery is not probable. I will be stuck being hard of hearing anyway so I'll have to end it no matter what.

People should enjoy their lives as there is no way knowing what's around the corner - your life can go from 100 to zero in a matter of months, no matter what you have achieved or had - it was all a simulation.

Hey man, I read your story and I believe there's something that could explain your debilitating symptoms. Do you remember getting any flu-like symptoms prior to the tinnitus onset? I say this because COVID-19 is messing with some people's brains, giving them a myriad of odd symptoms in what they now call Long COVID-19 (I am one of those affected)

It mimics a lot of auto-immune disorders so maybe you can get tested for it. Just a thought.

 

[Lukee]

Hey man, I read your story and I believe there's something that could explain your debilitating symptoms. Do you remember getting any flu-like symptoms prior to the tinnitus onset? I say this because COVID-19 is messing with some people's brains, giving them a myriad of odd symptoms in what they now call Long COVID-19 (I am one of those affected)

It mimics a lot of auto-immune disorders so maybe you can get tested for it. Just a thought.

Viral can mimic autoimmune disease but it can also trigger autoimmune disease. If the virus is active then viral treatment would likely help in either case.

 

[Óscar PP]

If I ever get the guts to commit suicide I'll just make sure everyone knows it was because of tinnitus and not depression or any other BS they try to blame it for.

It will be my last contribution to the cause, and maybe Kent Taylor and I can become the two martyrs that were needed in order to bring awareness of this disease, and people in the future will no longer have to suffer from it, and all the Jastreboffs of the world would be put behind bars for all the pain they've caused.

 

[Zugzug]

If I ever get the guts to commit suicide I'll just make sure everyone knows it was because of tinnitus and not depression or any other BS they try to blame it for.

It will be my last contribution to the cause, and maybe Kent Taylor and I can become the two martyrs that were needed in order to bring awareness of this disease, and people in the future will no longer have to suffer from it, and all the Jastreboffs of the world would be put behind bars for all the pain they've caused.

I feel your suffering, but sadly, no one will view you as a martyr. You will get blamed for how you "dealt with it." Sorry

 

[Matchbox]

I'm getting on the urge of throwing myself into traffic here.

I don't understand why noone is actually helping me. No MRI needed apparently from the neurologist, just a jest that my condition is "certainly unusual."

I hear distortions everywhere, vomit inducing humming, and the WORST are the explosions in my ears, left, right, both. They're getting worse, louder, and more frequent at night.

I wake up EVERY day at 4 am to low nauseating buzzing in one ear, fluttery clipping in the other and to this awful random VrrrrrOOOOM in both ears as I try to fall back asleep (imagine a horn being honked around you just when you're about to sleep, and it DOESN'T STOP).

It is absolutely impossible to sleep, so I've been operating on 4 hours of sleep for weeks while trying to work.

Add to that, getting my heart rate up really cuts this shit down a lot, bending over (head lower than body/head rush) and I hear INSANE wavering at crazy volume in one ear (quieter in the other).

It. Is. Fucking. Hard.

Zopiclone doesn't work anymore. I took 10 mg and still woke up at 4 am to the buzzing and VRROOOM, both of which are completely unaffected by Zopiclone now.

Doesn't this NOT merit an MRI?

 

[Óscar PP]

I'm getting on the urge of throwing myself into traffic here.

I don't understand why noone is actually helping me. No MRI needed apparently from the neurologist, just a jest that my condition is "certainly unusual."

I hear distortions everywhere, vomit inducing humming, and the WORST are the explosions in my ears, left, right, both. They're getting worse, louder, and more frequent at night.

I wake up EVERY day at 4 am to low nauseating buzzing in one ear, fluttery clipping in the other and to this awful random VrrrrrOOOOM in both ears as I try to fall back asleep (imagine a horn being honked around you just when you're about to sleep, and it DOESN'T STOP).

It is absolutely impossible to sleep, so I've been operating on 4 hours of sleep for weeks while trying to work.

Add to that, getting my heart rate up really cuts this shit down a lot, bending over (head lower than body/head rush) and I hear INSANE wavering at crazy volume in one ear (quieter in the other).

It. Is. Fucking. Hard.

Zopiclone doesn't work anymore. I took 10 mg and still woke up at 4 am to the buzzing and VRROOOM, both of which are completely unaffected by Zopiclone now.

Doesn't this NOT merit an MRI?

What about Mirtazapine or Trazodone (or both) for sleep? Without Mirtazapine, I'd be dead now...

 

[Gee82]

I'm getting on the urge of throwing myself into traffic here.

I don't understand why noone is actually helping me. No MRI needed apparently from the neurologist, just a jest that my condition is "certainly unusual."

I hear distortions everywhere, vomit inducing humming, and the WORST are the explosions in my ears, left, right, both. They're getting worse, louder, and more frequent at night.

I wake up EVERY day at 4 am to low nauseating buzzing in one ear, fluttery clipping in the other and to this awful random VrrrrrOOOOM in both ears as I try to fall back asleep (imagine a horn being honked around you just when you're about to sleep, and it DOESN'T STOP).

It is absolutely impossible to sleep, so I've been operating on 4 hours of sleep for weeks while trying to work.

Add to that, getting my heart rate up really cuts this shit down a lot, bending over (head lower than body/head rush) and I hear INSANE wavering at crazy volume in one ear (quieter in the other).

It. Is. Fucking. Hard.

Zopiclone doesn't work anymore. I took 10 mg and still woke up at 4 am to the buzzing and VRROOOM, both of which are completely unaffected by Zopiclone now.

Doesn't this NOT merit an MRI?

That exploding "vrrooom" symptom you describe reminds me of something I had come across a while ago; have you ever heard of Exploding Head Syndrome (EHS)? It might or might not be your case. Check it out.

Wikipedia: Exploding Head Syndrome

 

[Contrast]

Doesn't this NOT merit an MRI?

Usually the opposite happens and they shill an MRI for noxacusis/hyperacusis patients.