Suicidal

[PeteJ]

I hate when the tones are screaming!

I don't need a hearing aid so does that mean I am a candidate for this hearing/cochlear regeneration treatment? I believe that the inner ear has to be totally repaired. Will this treatment do that? I feel like I am the only one with these insane screaming tones. When it's this bad, it feels like my ear is in more pain physically. It's difficult to explain.
I don't know if I can wait 2 years for a treatment that might not work. I hate this!!!!!

 

[Mathieulh]

How can you be so sure?
I mean if Frequency fails (if that's even possible) then what?
You say absolutely? No more severe tinnitus? Retire in peace and quiet?

If Frequency fails, I am seriously considering booking at appointment at some clinic in Switzerland. I had had this torture for a year now, I know for a fact I can't stay my entire life with this. One way or another.

 

[acute]

If Frequency fails, I am seriously considering booking at appointment at some clinic in Switzerland. I had had this torture for a year now, I know for a fact I can't stay my entire life with this. One way or another.

They will not accept you.

 

[grate_biff]

The referal to have my tympanic muscle cut was rejected today. They want me to take Lyrica instead. A drug I have done much research on and it just seems like the worst drug in the world and I do not dare to take it.
Doesn't seem like any on this forum benefitted from it either (neither regarding tinnitus or pain-hyperacusis)

Seems like the end of the line for me...

 

[Harley]

The referal to have my tympanic muscle cut was rejected today. They want me to take Lyrica instead. A drug I have done much research on and it just seems like the worst drug in the world and I do not dare to take it.
Doesn't seem like any on this forum benefitted from it either (neither regarding tinnitus or pain-hyperacusis)

Seems like the end of the line for me...

You might be able to get it cut in some other country as the travel restrictions will be lifting eventually.

 

[PeteJ]

I don't think Frequency will fail for those who have support cells left (i.e. those without profound loss), especially for noise induced. They have shown their drug works in two different explanted cochlea studies now. The issue of penetrance will be solved a bit later than version 1.0 as well.

It won't help for non-cochlear causes, those with profound loss or synaptopathy without hair cell loss. But synaptopathy drugs are coming, too. Noise induced folks will have peace and quiet for sure.

I'm not so sure about my case because of the complete dead zones i have. Or at least, I may be waiting longer if I have it in me to.

I don't think I have profound hearing loss but I don't know what 90dB on an audiogram means.
I have a neighbor who is practically deaf in one ear and I can hear (better than she can). Yet, I am the one with screaming tinnitus that makes me feel suicidal.

 

[PeteJ]

Btw, my tinnitus went to "7/10" or was significantly less severe than usual for a while at one point today. I was at the park with my dog. It was still bad but not the terrible screaming tinnitus it often is. I had a shower after I got home and it was suddenly even "better." It didn't last long. But, during that time, it seemed like my tinnitus wasn't really bad in my left ear. Mostly bad in my head and maybe some volume in my right ear but difficult to tell. Is it especially bad when it seems like it's coming from your head?

Tonight, it's severe as usual but I don't understand this at all. It doesn't help that my left ear is in indescribable pain. In the ear but also just below in the usual area. I still don't know what this pain is from or why.

 

[Contrast]

The referal to have my tympanic muscle cut was rejected today. They want me to take Lyrica instead. A drug I have done much research on and it just seems like the worst drug in the world and I do not dare to take it.
Doesn't seem like any on this forum benefitted from it either (neither regarding tinnitus or pain-hyperacusis)

Seems like the end of the line for me...

My claim about medicine choosing the "safest and low risk option" has just been exhibited. Surgery takes risk and skill ceiling. In a world where everyone play's it safe we can't expect risk.

 

[FGG]

I don't think I have profound hearing loss but I don't know what 90dB on an audiogram means.
I have a neighbor who is practically deaf in one ear and I can hear (better than she can). Yet, I am the one with screaming tinnitus that makes me feel suicidal.

Degree of damage doesn't translate to tinnitus loudness but if you have better than profound loss, you should have the support cells needed for regenerative medicine to work.

 

[Ctw]

You're a beautiful person.
And yes, you have it in you.
XOXO

Dan, you're really a wonderful person. Thank you XO

 

[PeteJ]

Degree of damage doesn't translate to tinnitus loudness but if you have better than profound loss, you should have the support cells needed for regenerative medicine to work.

I hope so. I am sure the tinnitus is from acoustic damage and triggered from acoustic trauma. What does profound loss/90dB look like on an audiogram?

 

[serendipity1996]

Hyperacusis nearly gone but my anxiety is ramping up. I've recently begun to worry about fire alarms potentially causing another setback - not that I have been exposed to one but just the fear of being one noise incident away from further damage is really getting to me. I've even gone so far as to concoct hypothetical scenarios in my head of being employed at a workplace where the alarms constantly go off or what if I move into my own place and shun cooking for fear of triggering the smoke alarm. Really counterproductive worrying I know and I should be damn grateful I have recovered to the extent that I have but panic is creeping in.

 

[Chinmoku]

The referal to have my tympanic muscle cut was rejected today. They want me to take Lyrica instead. A drug I have done much research on and it just seems like the worst drug in the world and I do not dare to take it.
Doesn't seem like any on this forum benefitted from it either (neither regarding tinnitus or pain-hyperacusis)

Seems like the end of the line for me...

To be honest some people did benefit from Lyrica for hyperacusis. It tends to calm down nerves so it may work temporarily. The problem is that you may develop tolerance and at that point it's similar to benzos, or even worse. But it's highly individual. Some people stay on it for years and are stable, other gets ruined by taking it one week. It's very individual but quite risky.
I took it for two years, coming off was a nightmare, I had so many withdrawal symptoms and to this day I am not sure but I suspect it has been coming off Lyrica that transformed a relatively mild tinnitus in a monster that is killing me. Perhaps I should have stayed on it, but hitting tolerance in time is quite likely so the problem would only have been postponed. Moreover it does many other bad things to your brain.

Having said that if the alternative is jumping off a bridge perhaps one could try it.

Nobody in the forum benefited from it, but there is a case where norytriptiline and pregabalin cured one person. Also, this forums tends to attract mostly horror story, it could be that in an unbiased sample some people had success with it.

I'm not advocating taking lyrica, it's a drug that probably ruined me, but just trying to offer some perspective.

Have you considered other options like stem cells, waiting for the regenerative compounds (I know it's tough) and the upcoming treatments?

Do you exclude completely that staying off benzos for longer will improve your symptoms?

 

[FGG]

I hope so. I am sure the tinnitus is from acoustic damage and triggered from acoustic trauma. What does profound loss/90dB look like on an audiogram?

It looks like a dip in the line into the 90dB range.

 

[Kriszti]

I hope so. I am sure the tinnitus is from acoustic damage and triggered from acoustic trauma. What does profound loss/90dB look like on an audiogram?

Try to google "profound hearing loss audiogram" and there is like quite some picture of how hearing losses look like. In some webpage, there is explanation how to read an audiogram.

 

[Kriszti]

Hyperacusis nearly gone but my anxiety is ramping up. I've recently begun to worry about fire alarms potentially causing another setback - not that I have been exposed to one but just the fear of being one noise incident away from further damage is really getting to me. I've even gone so far as to concoct hypothetical scenarios in my head of being employed at a workplace where the alarms constantly go off or what if I move into my own place and shun cooking for fear of triggering the smoke alarm. Really counterproductive worrying I know and I should be damn grateful I have recovered to the extent that I have but panic is creeping in.

My mind works in a very similar way. I know it's catastrophic thinking and nothing good comes from it, but I don't know how to change my thinking into something less damaging to my anxiety.

 

[grate_biff]

Thank you for telling your story with Lyrica. I´m sorry that it probably worsened your tinnitus. I have also heard it is even worse than benzos to come off. That in itself is really frightening.

I´m currently corresponding with the hearing disorder expert here in Norway. Even though he believes in Jastreboff and TRT approach to our problem he is very knowledgeable and he has completely sold me the idea that noxacusis (pain hyperacusis) stems from problems/contractions with the tensor tympani muscle leading to irritation of the trigeminal nerve and ultimately the trigeminal cervical complex.
Without too much elaboration it really fits with what I am experiencing and that developing noxacusis can be a long process to develop after an acoustic trauma, prolonged stress and being obsessively occupied by one´s tinnitus.
I´m currently reading an article about it.

Do you exclude completely that staying off benzos for longer will improve your symptoms?

I have strong hopes that will be the case, but as the time goes by the hope diminishes. At least I know where the "prolonged stress factor" is coming from and the withdrawal has worsened my condition for sure.
Depends if the problem regarding my TTTS is reversible depending on the state of our nervous system. Could be! But I feel out of time here. I can´t take the pain anymore. Problem is to find a surgeon to do the procedure.

 

[serendipity1996]

My mind works in a very similar way. I know it's catastrophic thinking and nothing good comes from it, but I don't know how to change my thinking into something less damaging to my anxiety.

Same - I recognise it's classic anxiety disorder thinking and I have been referred to CBT by my ENT but I just don't know how to overcome it on my own. I think the last time I was exposed to a fire drill was something like 3-4 years ago so it's clearly irrational. Have been feeling quite optimistic lately but I guess my brain just LOVES being tormented by anxiety.

 

[Contrast]

he has completely sold me the idea that noxacusis (pain hyperacusis) stems from problems/contractions with the tensor tympani muscle leading to irritation of the trigeminal nerve and ultimately the trigeminal cervical complex.

There are two known types of noxacusis. The cochlear nociceptors and the tympani.

 

[xyz]

There are two known types of noxacusis. The cochlear noiceptors and the tympani.

Do you have a source for that? I would guess that this is interlinked. It starts off with some cochlear damage and after that the ear tries to protect itself from further damage so you get these ear muscle spasms.

 

[Contrast]

Do you have a source for that? I would guess that this is interlinked. It starts off with some cochlear damage and after that the ear tries to protect itself from further damage so you get these ear muscle spasms.

search for "pain"
https://hyperacusisfocus.org/innerear/

 

[Kriszti]

Same - I recognise it's classic anxiety disorder thinking and I have been referred to CBT by my ENT but I just don't know how to overcome it on my own. I think the last time I was exposed to a fire drill was something like 3-4 years ago so it's clearly irrational. Have been feeling quite optimistic lately but I guess my brain just LOVES being tormented by anxiety.

I was told to go to a psychiatrist as well, but I really don't know how they could help me, because I'm not willing to take any medicine. In my mind, everything that I'm afraid of tinnitus-wise is very real and rational. The world seems like a minefield and I have to go through blindfolded. My dad tried to "reason with me" that he or anyone else in the world could develop severe tinnitus and therefore it's absolutely futile to worry beforehand, and I know that this is true, but the difference is that they may be able to imagine, but I know what it's like to have severe tinnitus and instead of being happy and optimistic that it's not that bad right now, I cannot not fear the future.

I have been depressed and anxious for a long time, visited 3 therapists for other problems and up until now nothing has helped me.

 

[serendipity1996]

I was told to go to a psychiatrist as well, but I really don't know how they could help me, because I'm not willing to take any medicine. In my mind, everything that I'm afraid of tinnitus-wise is very real and rational. The world seems like a minefield and I have to go through blindfolded. My dad tried to "reason with me" that he or anyone else in the world could develop severe tinnitus and therefore it's absolutely futile to worry beforehand, and I know that this is true, but the difference is that they may be able to imagine, but I know what it's like to have severe tinnitus and instead of being happy and optimistic that it's not that bad right now, I cannot not fear the future.

I have been depressed and anxious for a long time, visited 3 therapists for other problems and up until now nothing has helped me.

This is the thing with having hearing-damaged ears - there's a part of me that reckons I am actually being entirely rational because unfortunately for those of us afflicted with T and H these types of noise exposures can be potentially hazardous and lead to significant spiking or even worsening. Being pragmatic, there are constructive steps I could take e.g. ear protection, informing employers so you can know about fire drills in advance. Hell, there are even smoke detectors designed for deaf/hearing impaired people that rely on strobe lights and vibrations. But still the anxiety persists.

I just don't think I could take the emotional rollercoaster that comes with a spike - the fear of worrying about whether it's permanent or not etc etc. It's just unbearable. Before I got tinnitus and hyperacusis, e.g. when I was younger and at school fire alarms obviously weren't something I worried about. Now it's like an entirely different ballgame.
I'm also a bit worried I'll just get told that 'it can't damage you if it's X amount of decibels and under X minutes/hours' because that rule seems to go out of the window for those of us with already-damaged auditory systems so that's not much consolation.

 

[Zugzug]

My dad tried to "reason with me" that he or anyone else in the world could develop severe tinnitus and therefore it's absolutely futile to worry beforehand,

With all due respect, I don't think this totally portrays the picture correctly. People with tinnitus and hyperacusis are much more prone to setbacks. I'm not saying the sentiment of finding ways to live with the anxiety aren't valid, but there has to be a way to straddle the irrational and rationals fears here. They are not all irrational. It's not like the probability of getting a setback from a fire alarm just resets. The people that say that it does are typically fake tough guys with mild tinnitus and thinking they are so strong for overcoming it.

 

[Backpacker]

Interesting stuff about inner ear disorders and injuries. I read some of these already. Hey @xyz, if you scroll to "Holes, Leaks and Fluid Regulation", you will see you and @Contrast posted some stuff from the same doctor.

 

[Kriszti]

With all due respect, I don't think this totally portrays the picture correctly. People with tinnitus and hyperacusis are much more prone to setbacks. I'm not saying the sentiment of finding ways to live with the anxiety aren't valid, but there has to be a way to straddle the irrational and rationals fears here. They are not all irrational. It's not like the probability of getting a setback from a fire alarm just resets. The people that say that it does are typically fake tough guys with mild tinnitus and thinking they are so strong for overcoming it.

Yes, I know that we are cursed with a weakened auditory system unfortunately and people without it really can't fathom how sounds actually can hurt you. I think he just meant that other people can have tinnitus out of the blue the same way I got it.

I really should do something about my anxiety, because it's getting out of hand. I'm vigilant about dangers, but I'm at the point that I can have a full blown anxiety attack when someone else is doing the dishes that some bowl may get dropped on the floor. When I'm not in that mindset, I'm aware that those fears are probably irrational.
During lockdown, my baseline went down (with some very bad days, but on average it's better). The 1-2 hour long temporary spikes (reactive tinnitus?) after showering, being in the car and so on, remained at the same level, so the difference is even more perceivable and I'm very afraid that I'm on my way to develop phonophobia.

(And I really don't mean to offend anyone who has it a lot worse than me with talking this much about my low-moderate tinnitus, but I guess the very loud buzzing which started all of this and the incapability of sleeping for months really messed me up. I'm not a very mentally strong person to begin with. )

 

[xyz]

Interesting stuff about inner ear disorders and injuries. I read some of these already. Hey @xyz, if you scroll to "Holes, Leaks and Fluid Regulation", you will see you and @Contrast posted some stuff from the same doctor.

Yes, seems there are some knowledgeable doctors on hyperacusis in Chicago.

 

[Zugzug]

I really should do something about my anxiety, because it's getting out of hand. I'm vigilant about dangers, but I'm at the point that I can have a full blown anxiety attack when someone else is doing the dishes that some bowl may get dropped on the floor. When I'm not in that mindset, I'm aware that those fears are probably irrational.
During lockdown, my baseline went down (with some very bad days, but on average it's better). The 1-2 hour long temporary spikes (reactive tinnitus?) after showering, being in the car and so on, remained at the same level, so the difference is even more perceivable and I'm very afraid that I'm on my way to develop phonophobia.

(And I really don't mean to offend anyone who has it a lot worse than me with talking this much about my low-moderate tinnitus, but I guess the very loud buzzing which started all of this and the incapability of sleeping for months really messed me up. I'm not a very mentally strong person to begin with. )

I honestly think most hyperacusis/tinnitus patients know they are developing phonophobia when they take precautions to limit the damage. But it's better than the alternative. This condition is so torturous that I would rather take few risks, but be able to comfortably sleep, watch TV, go for walks, than sit in a room with earplugs and earmuffs in, unable to move essentially.

Of course, it should go without saying, that no one wants phonophobia either, as this is also has a massive quality-of-life impact. But I don't think the TRT doctors understand this from the patient's perspective. I don't think the typical patient is being totally irrational by avoiding certain sounds.

It all sucks. The patient is just doing the best they can with the hand they were dealt. No one tells a paraplegic that they have a "fear of putting weight on their legs." Of course they do. It's called a shitty hand.

 

[PeteJ]

It looks like a dip in the line into the 90dB range.

Oh okay, thanks for explaining. Sorry if it's self explanatory. My brain doesn't work anymore.

My left ear dips as low as in between 40 and 50. My right ear dips between 20 and 30.

 

[serendipity1996]

I honestly think most hyperacusis/tinnitus patients know they are developing phonophobia when they take precautions to limit the damage. But it's better than the alternative. This condition is so torturous that I would rather take few risks, but be able to comfortably sleep, watch TV, go for walks, than sit in a room with earplugs and earmuffs in, unable to move essentially.

Of course, it should go without saying, that no one wants phonophobia either, as this is also has a massive quality-of-life impact. But I don't think the TRT doctors understand this from the patient's perspective. I don't think the typical patient is being totally irrational by avoiding certain sounds.

It all sucks. The patient is just doing the best they can with the hand they were dealt. No one tells a paraplegic that they have a "fear of putting weight on their legs." Of course they do. It's called a shitty hand.

This is so true and I think often gets neglected when discussing how to deal with anxiety because you're often told it's irrational when I'd argue it's not wholly so. I mean, me worrying about very specific hypothetical scenarios that are unlikely to happen is irrational but for those of us with tinnitus/hyperacusis there's often a kernel of rationality at the core of these fears - if your auditory system is already damaged then of course stuff like fire alarms are going to pose more of a threat to you than for people with healthy ears.