Suicidal

[dan]

I absolutely can relate to this. It's 2 am and I'm tortured in bed. Up to 3 months ago the night/sleep was my only refuge. I tried to do all the right things. I hope you are luckier than I have been.

Has it gotten worse? Yours is only in 1 ear, right ? Other is quiet...

 

[Chinmoku]

Has it gotten worse? Yours is only in 1 ear, right ? Other is quiet...

It started mild with an ear infection but now it's unbearable. I suspect medication. No other apparent reason for the progressive worsening.
It's mostly in the left ear but I have it in the right ear too now.

 

[GBB]

It started mild with an ear infection but now it's unbearable. I suspect medication. No other apparent reason for the progressive worsening.
It's mostly in the left ear but I have it in the right ear too now.

While I know it tends to stop working for most responders, pramipexole has had the strongest effect on attenuating my tinnitus thus far. It is a night and day difference at the moment.

My neurologist had no problem prescribing when I showed her the study, and she said it is a generally safe drug. I just wish the effect lasted indefinitely. Most positive accounts look like they only last 2-3 months for relief.

 

[GoatSheep]

While I know it tends to stop working for most responders, pramipexole has had the strongest effect on attenuating my tinnitus thus far. It is a night and day difference at the moment.

My neurologist had no problem prescribing when I showed her the study, and she said it is a generally safe drug. I just wish the effect lasted indefinitely. Most positive accounts look like they only last 2-3 months for relief.

Is this something that you have to take daily for it to have an effect or can you use it intermittently like benzos?

 

[GBB]

Is this something that you have to take daily for it to have an effect or can you use it intermittently like benzos?

It has to be taken daily. I take it 3x a day.

 

[Kriszti]

It has to be taken daily. I take it 3x a day.

How do you mean that it is relatively safe?

 

[Chinmoku]

While I know it tends to stop working for most responders, pramipexole has had the strongest effect on attenuating my tinnitus thus far. It is a night and day difference at the moment.

My neurologist had no problem prescribing when I showed her the study, and she said it is a generally safe drug. I just wish the effect lasted indefinitely. Most positive accounts look like they only last 2-3 months for relief.

Thank you for this, @GBB. I'll call my neurologist tomorrow. I'm nervous going on a dopaminergic drug. Previously I tried Quetiapine but at a dose where the dopaminergic effect would be probably absent. It spiked my tinnitus, which _might_ suggest I needed more dopamine, not less. I never tried a dopamine agonist. I wonder how I would react, a naive interpretation would see excitatory/activating neurotransmitters like serotonin and dopamine aggravate an already overexcited system of neurons. However, studies are conflicting here as there is a study where Sertraline improved tinnitus in a trial but also a study where they show that serotonin and SSRI may worsen tinnitus. For dopamine, as I wrote elsewhere, there are studies supporting both Pramipexole (more dopamine) or Sulpiride (less dopamine). It looks like we would need a dopamine modulator rather than agonist or antagonist.
Anyway I'm desperate, trying Pramipexole might be worth it, if it gave me 3 months of relief I'd go through a rapid taper of the benzo, which I suspect to be wrecking havoc, and then see what happens. As it is now, tapering is impossible. I'll call my neurologist tomorrow to see what he thinks about this rather than the Shulman protocol.

On a last note, the Pramipexole thread here on the forum wasn't super-reassuring, little success there but we are all different, and I am really happy that it is helping you.

 

[GBB]

Thank you for this, @GBB. I'll call my neurologist tomorrow. I'm nervous going on a dopaminergic drug. Previously I tried Quetiapine but at a dose where the dopaminergic effect would be probably absent. It spiked my tinnitus, which _might_ suggest I needed more dopamine, not less. I never tried a dopamine agonist. I wonder how I would react, a naive interpretation would see excitatory/activating neurotransmitters like serotonin and dopamine aggravate an already overexcited system of neurons. However, studies are conflicting here as there is a study where Sertraline improved tinnitus in a trial but also a study where they show that serotonin and SSRI may worsen tinnitus. For dopamine, as I wrote elsewhere, there are studies supporting both Pramipexole (more dopamine) or Sulpiride (less dopamine). It looks like we would need a dopamine modulator rather than agonist or antagonist.
Anyway I'm desperate, trying Pramipexole might be worth it, if it gave me 3 months of relief I'd go through a rapid taper of the benzo, which I suspect to be wrecking havoc, and then see what happens. As it is now, tapering is impossible. I'll call my neurologist tomorrow to see what he thinks about this rather than the Shulman protocol.

On a last note, the Pramipexole thread here on the forum wasn't super-reassuring, little success there but we are all different, and I am really happy that it is helping you.

I can only speak to my own circumstances but after the nausea side effect faded the first few days my tinnitus went from a 7 to maybe a 2-3. I'm in a silent room right now and really relaxed which was impossible before. All I can say is it seems to work for me for the time being but I expect it will stop at some point.

 

[GBB]

How do you mean that it is relatively safe?

My neurologist said she was fine prescribing it as it has no pronounced toxicity like other drugs. She also said the same about Keppra which I haven't tried but may at some point.

I'm sure all drugs have risks - safe is a relative term.

 

[kamil1364]

I am not even 20 years old.

My tinnitus is pretty mild hiss, what bothers me more is dysacusis. I hear morse code like beep over sounds like fans, blowdryers or car engines.

Audiogram in normal range seems to be okay, I can hear up to 16 kHz at minimal volume, 17 kHz at low volume and 18.5 kHz at medium volume (I still need to make extended audiogram). Overall my hearing is comparable to friends of my age who have played with me in bands. All in all, I don't have any trouble with hearing, even with conversations in noisy environments.

I could live with that mild tinnitus, but dysacusis (od whatever you call it) that comes with it makes masking using white noise impossible. I will try cutting out troublesome frequencies, but it doesn't change the fact that I will still hear it over fans or car engines.

My hyperacusis is on the very mild side, I can't stand the sound of lawnmower (which wasn't a problem earlier), but still it's another poorly researched health condition that I have to deal with.

So my tinnitus and hyperacusis are mild, dysacusis is a bit worse. Nonetheless, it still makes my life an absolute nightmare. I don't even have words for this, and being on constant fear of it getting worse doesn't help either.

No one gives a damn, no one understands, when I say that I'd give both my legs for a possibility to exchange that shit for cancer I just get weird looks.

"OMG it's just some weird-ass noise in your head, get over it, and why are you wearing earplugs here, it's not that noisy".

I can't hang in there much longer. How can I lead normal life again if everytime I turn on a blowdryer or there is a car passing by I am going to hear that beep morse code? It's not constant, thus it's not possible to habituate.

Having dysacusis makes you feel isolated even within tinnitus community.

 

[GBB]

@kamil1364

I have dysacusis that literally makes the wind sound like a squeaking see-saw. It's truly atrocious. I believe it is either inflammation in the cochlea, bent hair cells, or damaged synapses/nerves. Only in the second case could I see emerging therapies having trouble rectifying things. I take heart in that for the majority, these things disappear, although it can sometimes take up to 18 months. Please know you are not alone, and that this condition while tough, should hopefully improve naturally or with new therapies.

 

[dan]

I hear morse code like beep over sounds like fans, blowdryers or car engines.

You'll get used to it eventually... yeah it sucks but hey it can be much much worse, I'll trade what you got any day.

 

[kamil1364]

Dysacusis/reactive tinnitus are so full of nonsense.

It's just unnecesary suffering, I already know I lost some of the ultra high 17 kHz+ frequencies, can't my brain shut up about it, really.

I was never so unable to function normally.

This whole tinnitus/hyperacusis/dysacusis etc bullshit is invention of Satan.

And why can't it motherfucking kill me, it should be lethal. It has already taken everything from me, and yet I still have to exist, at least until I finally kill myself.

And it all feels so unfair, I never really got any warning, no temporary tinnitus ever. Just first time, and it's permanent.

It's almost funny that a bit of loud music can make you suffer so badly for the rest of your life.

 

[jay777]

What are you talking about?

A club I hope you never get into. The 1% are the people whose tinnitus is deadly.

 

[Chinmoku]

I can only speak to my own circumstances but after the nausea side effect faded the first few days my tinnitus went from a 7 to maybe a 2-3. I'm in a silent room right now and really relaxed which was impossible before. All I can say is it seems to work for me for the time being but I expect it will stop at some point.

I hope it does not stop working. I checked again the abstract of the study, it says

Objectives/Hypothesis:
Since the concept of tinnitus dopaminergic pathway emerged, studies have been proposed to investigate if dopaminergic agents influence tinnitus. We hypothesized that pramipexole, an agonist on D2/D3 receptors, may antagonize tinnitus in the presbycusis patients (in the frequency range of 250 to 8,000 Hz) in a dose schedule accepted for the treatment of Parkinson's disease in elderly people.

Just to double check: your tinnitus is >8 kHz and Pramipexole worked anyway, right?

 

[kamil1364]

A club I hope you never get into. The 1% are the people whose tinnitus is deadly.

How is their tinnitus deadly?

I'd like mine to be too, it's apparently too hard to kill yourself, and as for now it's the only successful treatment we have.

 

[GBB]

I hope it does not stop working. I checked again the abstract of the study, it says

Just to double check: your tinnitus is >8 kHz and Pramipexole worked anyway, right?

It changes now - originally was a pure tone screaming at 14 kHz, though I hear that more and more seldom - generally only after a spike or in the evenings. Now most of what I hear sounds atonal - very similar to a bag of coins being shaken near your ear, just an atonal sort of shhhh, shhhh, shhhh. I know that sounds bizarre but that's the truth of it. This change came on before pramiprexole. The Pramipexole seems to have turned down the volume on most tinnitus/distortion that I hear, but it still ranges, though the upper and lower bounds are now lower.

 

[Chinmoku]

It changes now - originally was a pure tone screaming at 14 kHz, though I hear that more and more seldom - generally only after a spike or in the evenings. Now most of what I hear sounds atonal - very similar to a bag of coins being shaken near your ear, just an atonal sort of shhhh, shhhh, shhhh. I know that sounds bizarre but that's the truth of it. This change came on before pramiprexole. The Pramipexole seems to have turned down the volume on most tinnitus/distortion that I hear, but it still ranges, though the upper and lower bounds are now lower.

I'm reasoning on this, I left a message to my neurologist. I read some anecdotal reports and some agree the drug loses effectiveness in a few months but not always. I hope it keeps working for you. My main issue is that I can't risk any further worsening and if the dopamine direction is wrong it might be tough. There is a case here in the forum where Pramipexole brought the tinnitus to monster level.

Quetiapine and other medications that tend to block dopamine (Cinnarizine for example) never worked for me and made me feel worse and depressed or worsened my tinnitus, so I would imagine going in the opposite direction with dopamine agonist might be worth a shot. My tinnitus has a sort of terrible restlessness and I know Pramipexole is used also for restless legs symptoms. There are important side effects but I am ready to face them if this horror can be brought under control, I can't go on like this. I will follow your progress with interest and I definitely hope it keeps working for you.

 

[GBB]

I'm reasoning on this, I left a message to my neurologist. I read some anecdotal reports and some agree the drug loses effectiveness in a few months but not always. I hope it keeps working for you. My main issue is that I can't risk any further worsening and if the dopamine direction is wrong it might be tough. There is a case here in the forum where Pramipexole brought the tinnitus to monster level.

Quetiapine and other medications that tend to block dopamine (Cinnarizine for example) never worked for me and made me feel worse and depressed or worsened my tinnitus, so I would imagine going in the opposite direction with dopamine agonist might be worth a shot. My tinnitus has a sort of terrible restlessness and I know Pramipexole is used also for restless legs symptoms. There are important side effects but I am ready to face them if this horror can be brought under control, I can't go on like this. I will follow your progress with interest and I definitely hope it keeps working for you.

I'll keep updating if it is helpful. I understand the stakes for you are high so happy to provide any info/insight I can. Whatever you decide, of course, I wish you the best.

 

[PeteJ]

Does anyone know what the % is for spikes due to acoustic trauma vs actual, permanent worsening due to acoustic trauma, here?

I am dying now.

A few posters asserted that spikes can take a few days to weeks to months, right? I wonder what they base that on.

I am just wondering if it's possible to have an idea of how long a spike will last based on statistical probability (without any other stat or medical conclusion to guide someone).

Inferences, conclusions, guesses etc. based on???

 

[dan]

How is their tinnitus deadly?

Figuratively speaking...

 

[Zugzug]

I'll keep updating if it is helpful. I understand the stakes for you are high so happy to provide any info/insight I can. Whatever you decide, of course, I wish you the best.

What is the side effect profile like for Pramipexole?

 

[GBB]

What is the side effect profile like for Pramipexole?

I had nausea the first day. Other than that nothing so far for me personally, but I'm sure there are many possible side effects.

 

[weab00]

Dysacusis/reactive tinnitus are so full of nonsense.

It's just unnecesary suffering, I already know I lost some of the ultra high 17 kHz+ frequencies, can't my brain shut up about it, really.

I was never so unable to function normally.

This whole tinnitus/hyperacusis/dysacusis etc bullshit is invention of Satan.

And why can't it motherfucking kill me, it should be lethal. It has already taken everything from me, and yet I still have to exist, at least until I finally kill myself.

And it all feels so unfair, I never really got any warning, no temporary tinnitus ever. Just first time, and it's permanent.

It's almost funny that a bit of loud music can make you suffer so badly for the rest of your life.

Yes indeed. It is such bullshit. I also struggle with pain hyperacusis and dysacusis/reactive tinnitus brought on by headphones. It's like these conditions are designed to take away every hobby, every passion, every simple enjoyment in life from you and then some. But just enough to keep you alive at the edge. I wish with every fiber of my being that I could travel back in time and punch the old me in the face for listening to loud headphones/not wearing protection. I had no idea the disastrous effects it could have on your body.

 

[GBB]

Yes indeed. It is such bullshit. I also struggle with pain hyperacusis and dysacusis/reactive tinnitus brought on by headphones. It's like these conditions are designed to take away every hobby, every passion, every simple enjoyment in life from you and then some. But just enough to keep you alive at the edge. I wish with every fiber of my being that I could travel back in time and punch the old me in the face for listening to loud headphones/not wearing protection. I had no idea the disastrous effects it could have on your body.

I fantasize about coming out of a portal right as the ENT is about to put the microsuction thing is my ear, and grabbing his arm in a "not so fast" kinda way.

 

[donotringatme]

Yes indeed. It is such bullshit. I also struggle with pain hyperacusis and dysacusis/reactive tinnitus brought on by headphones. It's like these conditions are designed to take away every hobby, every passion, every simple enjoyment in life from you and then some. But just enough to keep you alive at the edge. I wish with every fiber of my being that I could travel back in time and punch the old me in the face for listening to loud headphones/not wearing protection. I had no idea the disastrous effects it could have on your body.

You don't have ear damage. You have done the same bs I have, which is hard / improper mewing, I read your introduction while looking for relevant threads here about mewing. We messed your upper palate up and apparently now our jaw joints are too close to the ear. Muscle tension is definitely not helping and so is pushing tongue up the roof of the mouth if you're still doing it. One idea thrown at me was to reverse suction (which I won't do but you can try if you want): check the image posted.

Depending on how stupid each of us were, we could have ruined our bite significantly which translates to a thousand chew movements a day done wrong. But what we seem to have is a backwards bite. Sort of.

Leave your tongue be where it should be without pushing up or resting up, go to a good manual therapist to remove muscle tension from everywhere and then take X-rays from both your TMJ to see what kind of damage there is (hopefully reversible, as I don't think we are stupid enough to push enough to make the TMJ socket actually hit the zygomatic where the ear lies, or something like that). I want to believe it's just overworked and maybe slightly hypertrophic muscles in relation to the bad bite.

Orthotics can't reverse this as far as I know but perhaps they can, never say never. In other words, we are in deep sh*t but I think we can manage.

 

[weab00]

You don't have ear damage. You have done the same bs I have, which is hard / improper mewing, I read your introduction while looking for relevant threads here about mewing. We messed your upper palate up and apparently now our jaw joints are too close to the ear. Muscle tension is definitely not helping and so is pushing tongue up the roof of the mouth if you're still doing it. One idea thrown at me was to reverse suction (which I won't do but you can try if you want): check the image posted.

View attachment 41093

Depending on how stupid each of us were, we could have ruined our bite significantly which translates to a thousand chew movements a day done wrong. But what we seem to have is a backwards bite. Sort of.

Leave your tongue be where it should be without pushing up or resting up, go to a good manual therapist to remove muscle tension from everywhere and then take X-rays from both your TMJ to see what kind of damage there is (hopefully reversible, as I don't think we are stupid enough to push enough to make the TMJ socket actually hit the zygomatic where the ear lies, or something like that). I want to believe it's just overworked and maybe slightly hypertrophic muscles in relation to the bad bite.

Orthotics can't reverse this as far as I know but perhaps they can, never say never. In other words, we are in deep sh*t but I think we can manage.

Mewing could've been a contributing factor. I also think sound exposure was. But I will see to seeing a TMJ specialist. I mewed for like a year and a half. Are you saying we're fucked or that there's a chance we could get better? I've never heard of this shit causing hyperacusis but maybe it could and is... You've piqued my interest.

Btw I was only soft mewing.

 

[donotringatme]

Mewing could've been a contributing factor. I also think sound exposure was. But I will see to seeing a TMJ specialist. I mewed for like a year and a half. Are you saying we're fucked or that there's a chance we could get better? I've never heard of this shit causing hyperacusis but maybe it could and is... You've piqued my interest.

Btw I was only soft mewing.

No you were hard mewing and so was I. It isn't a contributing factor, it's the only factor. I'll update you soon regarding that. It causes all kinds of things, depending what nerves are being irritated. And yes; we f'd up big time but I'll have updates soon.

 

[weab00]

No you were hard mewing and so was I. It isn't a contributing factor, it's the only factor. I'll update you soon regarding that. It causes all kinds of things, depending what nerves are being irritated. And yes; we f'd up big time but I'll have updates soon.

Isn't hard mewing forcefully applying pressure? Soft mewing is simply resting the tongue on the top of the palette, which is what I was doing. Also, I can't afford to get an MRI with my hyperacusis. CT scan and x-rays are fine though. I happened to be blasting my headphones and mowing lawns without hearing protection around the time I got tinnitus/hyperacusis. Anyway if it's some obscure nerve being touched due to mewing then I guess we are fucked lmao, I don't have the money to go through extensive testing.

 

[kamil1364]

Yes indeed. It is such bullshit. I also struggle with pain hyperacusis and dysacusis/reactive tinnitus brought on by headphones. It's like these conditions are designed to take away every hobby, every passion, every simple enjoyment in life from you and then some. But just enough to keep you alive at the edge. I wish with every fiber of my being that I could travel back in time and punch the old me in the face for listening to loud headphones/not wearing protection. I had no idea the disastrous effects it could have on your body.

Yeah, literally all I thought is going to happen is some hearing loss. And as soon as I start seeing the symptoms of it, I would just lower the volume.

I know I screwed up a bit, but I really really wish that someone warned me about how wrong I was. Some hearing loss is bearable, but that whole tinnitus thing...