Suicidal

Wow, thanks for explaining. That sounds rough. I remember now reading you had bad migraines for years. I do believe in CBT but not as a cure, just something to prevent (most) from nonstop panic. I also don't believe everyone can habituate. I am hoping these treatments coming in the future can at least take the edge off for you, me, and many others.

When you spike, is it just louder noises, or do your tinnitus tones go crazy? I find my tones flip out more than my background ringing gets louder. I get both though. Also, the other two days, how are they? Are they at least manageable? The up and down, variable tinnitus does not let you get used to it.

I can't say things will get better... you have had this for many years. What I can say is you have made it this far and you are a strong individual. I just hope something eventually gives away and allows you a path forward without so much anguish.

There is always a ray of hope floating around somewhere. I think @Damocles didn't see much improvement until around 10 years. Tinnitus is a huge YMMV and we should strive to try everything we can, as safely (lol) as we can, before giving in. I put "lol" because every damn thing is a double edged sword.

I can tell you're a smart guy and you've heard it all so this post wasn't meant to preach to you. Just that I hear you and I can somewhat understand what you are feeling.

 

I went to an ENT and got a Dexamethasone IT injection yesterday. It lowered the volume so much. I'm so happy and relieved. I can live again! I feel like I've been cured (even though I still have it in quiet). Only hearing it in quiet is basically the same as not having tinnitus at all, compared to hearing it screaming over the freeway and work meetings.

 

Why wouldn't you consider having kids?

I mean, you live in a fantastic country and I guess women are expected to work too and be supportive.

 

@Zugzug, how are you doing? Feeling better?

 

Is anybody’s tinnitus as loud as mine? I can hear it while walking around the house. It screams very loud over the TV. I hear it while walking around outside. I hear it in the grocery store. I hear it while driving down the highway. It’s very loud all the time. The only escape I have is through sleep. I look forward to going to sleep everyday. Can anybody else relate?

 

Oh yeah most definitely. Only thing that can mask it is a high pressure faucet/shower, right?

I have many different sounds and tones too.

 

You mean like Walter White?

 

Yes exactly! Not even my sound therapy that I play through my hearing aids can mask it. It’s just way too high pitched and loud!

Do you use sound therapy at all?

 

I used to be able to hear mine in the shower.

 

No sound therapy. Just keep my room at 34 dB. Something has to hum or else my mid tones go insane.

 

Yup. Hear it everywhere (shower, etc), all the time.

 

I was led to believe I had IC years ago.

I no longer believe in this label.

It was a biofilm UTI that I've successfully treated. Pain free for a long while now.

Part of my healing was consulting with Prof. Malone Lee in the UK who has a clinic specifically dealing with embedded utis.

 

Do you use sound therapy to try to mask it?

 

The noxacusis kicking my ass today, I had 4 days of mild pain, but having a current flareup. These flareups really push me to the edge and it’s when I get extremely suicidal. This stabbing pain is driving me insane, how much longer will I have to endure this fucking torture.

 

No. I do have a hearing aid that has a white noise masking feature. I gave it a try and ended up not using it. It bothered me just as much as my tinnitus and was preventing me from hearing the rest of the world.

I do run a fan at night, when I can. I also sleep with my hearing aid.

 

Having severe tinnitus and hyperacusis is like living on Mars, an inhospitable planet where everything’s alien and toxic. It just doesn’t work. You’re not made for that world; you’re incompatible. And it’s very isolating. One wrong move and your dead. For us, Earth becomes like that — like Mars — but retains all its life to further make it difficult.

Being on Mars, you’d lose everything. Family, friends, hobbies. Can’t be around them because of tinnitus and hyperacusis. You’d be bored and lonely.

You’d be locked in a bunker that’s pressurized and, when venturing out, have to wear a suit for protection. That’s like us, our earplugs and muffs. But even the protection ain’t good enough sometimes, so it’s worse than Mars.

Maybe some bad-off tinnitus and hyperacusis sufferers wanna sign-up to go to Mars, as we’re already living the Mars-life. We got it down. And it wouldn’t seem so isolating there. There are no windows to tease you as you look out and watch the world pass you by, seeing other people living life and experiencing joy. On Mars, there is no world to pass you by. It’s desolate; nothingness. We wouldn’t feel left out there. Ironically, we’d feel at home. It’s a better fit than earth for us. It would be quiet, too, except for those annoying sandstorms that occasionally rage. You’d wanna make sure the bunker is soundproofed or something.

But while some of this is funny and seems like a joke, it’s quite true that going there may just be a better fit for some sufferers. Space is a quiet place. There is no sound in space; its vacuum ensures that — the sound-waves are nonexistent.

And if you’re suicidal, going to Mars doesn’t seem so scary anymore. No longer are you confronted by the high-stakes, the tense mission, or the odds that are just asking for danger. If your ship blows up on the way there, it’s a win-win. If you burn up in the atmosphere, no biggie. If your spacesuit gets cracked and you go all “Total Recall” and shit with your eyes bulging-out, thank you. It’s done. That’s not what would really happen, by the way. You’d just pass out after about :10 seconds as the lack of pressure would cut-off oxygen from entering the blood. Your saliva might boil initially, then freeze. You’d die within a minute or two, and your organs would expand, but not burst. It would be a painless death. Any death in space would, I think. The Total Recall way is cooler, though.



Maybe some of us ought to sign up if there’s a mission?

 

Write, my friend, keep on writing! I know a good writer when I see one. Most writers have it too good. They can not access this sort of fire. You’re making very good use of it. Keep going at it!

 

Thanks, @danielthor - I appreciate it! I enjoy your writings, too. You’re very talented as well. Writing sometimes helps me cope and express myself, and try to make sense of this madness.

 

May I ask what made it improve?

That is interesting. I can’t usually go longer than a couple of hours before I am at my wits' end with the torturous ringing and I have to turn on some sound therapy.

 

I think a mixture of time, protection from “loud” noises, maybe supplements? I’m not sure. Working out might have been a factor as well. But mainly time.

 

My hyperacusis was improving with GABA but then a small thing happened that I won't mention because of how crazy it'll make me sound. Now I've had a spike for the last few days that won't let up, and the pills are doing nothing. I thought this would be my ticket to improvement, but no. A week or so on GABA and L-Tryptophan eliminated the "jump" that I get from noise, the tremors and zaps at night, and was tolerating things much better. I even listened to 1 song with no issues. Still distorted and crappy sounding, but it was nice.

Secondly, I received my sound generators in the mail from the audiologist and was flicking the volume down button like crazy to no avail, so it would seem even the lowest setting on these is too loud for me. I was advised by other places to place it so it's barely audible but that's impossible for me.

And finally, I've begun therapy. I don't think she understands what hyperacusis really is. I told her that no matter how hard I try to ignore sound and 'push through' I still get worse regardless, she didn't get it. I explained things getting louder with each setback, she didn't get that either. Seems she thinks it's just a fear or annoyance. She mentioned some misophonic kids she dealt with before in comparison to me. Apples to oranges.

I didn't want to get back into therapy for this very reason but I got to appease the SSA somehow. Wondering if I should start linking resources or if I'll start looking crazier.

I understand the need to heal the brain but I wish there were better acknowledgement that if it is purely a brain thing, it's not just a psychological one. Noxacusis, loudness hyperacusis, whatever. None of this is imagined. None of this is just an annoyance. There is some kind of damage there. I hate that we can all pinpoint the before and after for our tinnitus/hyperacusis but somehow, SOMEHOW, it's got nothing to do with it to them.

On top of that, just waiting for organizations to reply to me so I can get out of my bad life mess. I've been pulling teeth for 6 months and it seems there's no end in sight. I think about how I am fighting just for a roof over my head to call my own and then I think about how many here struggle with apartment living and it seems not even worth it. None of this seems worth it. Why even continue?

 

I am feeling like I just want to die instead of this. This is my third night of 3 hour sleep. My ear is burning and my better ear that usually is silent rings loudly and I hear this weird seashell sound. I have heard this in my other ear before this but not in my "normal" ear. Usually when I try to fall asleep the ringing decreases, but now it only gets more intense when trying to fall asleep. I can't even mask my tinnitus because my ear has painful burning sensation and reacts to sounds. Even speaking sounds make the burning sensation worse.

I am freaking out because my healthier normal ear does this. I have not habituated to tinnitus like this. Two ears making different noises...

Usually my hyperacusis spikes calm down in few days but this is not showing any signs of calming down.

All of this happened after trying In-ear-maskers. The tuning of the hearing aids also irritated my ear a lot. The amplification of external sounds in my hearing aid/ maskers and listening to the white noise triggered my pain hyperacusis symptoms again. I just hope these symptoms go away. I have had some setbacks and it has taken some time to recover and I hope this is the case again. I am not going to try any new things to make me feel better. Trying things to help me can always make me feel worse.

I have been thinking suicide after I got hyperacusis (especially hyperacusis!) and tinnitus and I am feeling more and more I don't want to live. I have happier days but part of me have given up. I don't want to die but I don't want to live either. It is not a way to live constantly knowing setbacks can happen and knowing everything can get seriously worse in a moment.

At the same time I am going through benzo taper and I know it probably makes me even more sensitive and fragile. I have no idea what symptoms are caused by benzos.

It is summer, I don't care. I usually love summer but I just don't care anymore.

 

Yeah I had to return my original hearing aids because the amplification killed my hyperacusis. Hyperacusis always needs to be treated before tinnitus. I believe your spike will reduce back.

 

Did you get stem cells and did they help your tinnitus?

 

I don't know if there's a designated disability advice thread anywhere but I know there was a lot of talk about it earlier on with PeteJ.

I spoke with my lawyer (awesome guy, only one who was willing to take me on) and he was saying that it is hard for people to prove the mental health portions of this at a young age. I'm in my late 20s. He said that one route for disability could be with speech issues. such as being unable to or unable to maintain speech. If anyone has severe hyperacusis and have trouble speaking like I do, this can be a route to pursue, especially if your doctor notes it.

Now unfortunately, since I do have to go the hyperacusis route and not the mental health route, I need evidence. So that means I will likely need to brave LDL testing. Not looking forward to this. I've already taken a beating from the other useless ENT and audiology appointments, and I didn't even get testing done there.

I'm trying to weigh if getting a tympanometry might be worth pursuing instead since I think some said that test actually isn't that bad, and I can probably get some proof that my ear drum isn't responding correctly. Pick your poison, I guess...

 

If I had to choose between tympanometry or LDL test, I would select the LDL test.

 

Did you experience a setback that lasted for days after using the amplification? I just hope this is a temporary spike and reduces back soon.

 

My setbacks usually last only 1-2 days, however, over time, the behavior and patterns of my tinnitus and hyperacusis has gotten worse to me.

 

Same for me, at this point I don’t know what the fuck sets me back and what doesn’t. I have severe pain on random days too. I can have some mild days here and there and the severe stabbing pain comes full force out of the fucking blue.

 

One of my tinnitus tones looks like this in its wave-length form. The above picture/attachment represents 1 minute. So as you can see, it jumps up about every 15-20 seconds and is random. The jumps sound like car breaks squealing or electrical bursts of energy. They last about 1 second, sometimes 2. Very high frequency and not maskable in most environments. They feel that way, too, which is the worst part of it. Feels like I’m being tasered or shocked. Absolutely maddening. And as you can see in the picture, the zaps are not always the same volume. The higher the volume, the more painful they are. The lower parts sound like knives being sharpened against one another, but they don’t hurt usually, unless they’re elevated high enough on a particular day for the brain to register them as pain. On those days, the tone altogether feels and sounds like steam escaping through a pipe or something, along with the zaps still doing their thing.

I’m wondering if this is really two tones intermixed. Because some days, the lower parts change altogether from steam to hissing to static or white noise. But the zap portions are always the same. They always hurt, too. But it’d be weird to have a tinnitus tone that’s silent except for every 20 second when it decides to zap, right? I have some days when it’s like a 4 instead of 8 on the loudness scale, but it’s still intrusive even when it’s low because of the characteristics of the zaps—their unpredictability and pain aspects. So it’s sad ‘cause like, even if this tone is low, it’s not something I feel I can get used to. I feel it badly, even when it’s at its lowest. The emotional toll it takes is excruciating, especially on top of the severe hyperacusis I have.

Like WTF is going on up there in the ears or brain that produced such a perverted tone like this? Give me something I can work with—something reasonable. Come on, fuckin’ brain. “Hello, anybody home!” I wanna punch it in the face like George did Biff in “Back to the Future.” It’s holding us captive and stealing every aspect of our lives. These conditions are bullies, robbers, and murderers.





The girl in the car represents all the good things tinnitus takes from you. You’re fighting to get them back.











If we could only defeat tinnitus, we’d live happily ever after.



But I’m afraid some of us will wind up like George in alternate ‘85. Tinnitus gonna get us.