Suicidal

It sounds like you very well could have noise damage but one thing I have noticed is a tendency for ENTs (and people on this forum sometimes) to automatically assume noise induced tinnitus.

To complicate it, some non primary noise causes are actually acutely triggered by noise (e.g.. Third window syndromes like perilymph fistulas or secondary hydrops which can be noise triggered) but treated very differently.

And there are people with noise induced hearing damage that can have other co-morbidities like TMJ or vascular issues that have an additive effect and make tinnitus much worse. Some people could have more mild tinnitus by dealing with these cofactors.

When someone gets tinnitus and doesn't know why, the first thing people ask is have you ever been to concerts or used headphones and almost *everyone* has.

Tl;dr: Yours could primarily be noise induced but, if possible, it's always a good idea to rule out as many factors as you can, as long as the test (e.g MRI) isn't risky itself.

 

Can’t do an MRI because of hyperacusis. I probably have comorbidities like whiplash but it’s controversial whether mewing even moves your jaw, most dudes don’t see any progress. I have no symptoms for TMJ or ETD so not sure why this dude is saying it’s the ONLY factor lol.

 

I know absolutely nothing about mewing so it wasn't directly at that specifically.

 

Mewing isn't usually a problem, unless one has infection in the upper palate. This infection happens with pits between teeth and gums. Sacs of fluid - bacterial on the upper palate that enter the palate thru a pit. Pits usually happen from sharp objects - appliances - creating a pit on the upper palate, adjacent to a tooth. Then a bacteria source - food - cigarette smoke enters the pit. So with mewing, it's usually needed to have bacterial weakness to the upper soft palace for any damage to TMJ joint. With this, ear pain can happen from increased ear pressure. The side of neck will hurt and sometimes facial, sinuses and eyes. Damage can be done with finger pressure in trying to help drain the bacterial sac, but tongue pressure isn't enough to be a concern. Tongue pressure can increase one sided problems with TMJ or teeth over time, but tongue pressure to a side of lower front teeth is more of a concern

 

Literally I was one of the brightest minds my school has ever had when it comes to maths and physics, in freetime I was studying biology and chemistry, I played several instruments in a few bands and was very involved within electronic music/DJ community.

Now all I do is sitting at home and spending whole days on tinnitus forums.

And my parents sometimes think that I'm a psycho or just got lazy for no reason.

It's unbelievable, I feel like it's all just terrible nightmare. I find it hard to believe it is reality.

 

I have read several saddening comments on YouTube from severe tinnitus sufferers saying that they heard "X tinnitus supplement" was a scam. Probably from either me or Contrahealthscam but they bought it anyway because they figured it be worth the risk.

This is the desperation I see all the time. Even people who had tinnitus for decades fall for this snake oil. Why?

 

Hope springs eternal.

 

There are people who make it work but in general yes, we are now moderately to profoundly disabled. Good news is we can likely improve with the advent of new technology. Bad news is we are *special* now.

The smartest thing we can do is try to bide our time and create a good setup for Act II.

 

I am so tired of the pain.

The tinnitus, which gets much louder at night is bad enough (sometimes fire alarm loud) but the burning pain on top/back of my head for most of my waking hours and the burning ears on and off several times a day (even in silence) is getting to be almost too much. It's been almost seven months. I'm on Clonazepam .05 mg 2 x day and Gabapentin 300 mg x 3 a day (the Gabapentin it is being upped every two weeks to see if there is a point where it will work) but they are not alleviating or reducing the pain at all at this point.

I couldn't do much of anything before, but now, evening reading quietly, I have burning pain.

I can't imagine continuing to live with this pain day in and day out.

I am getting more and more depressed and hopeless.

Help!

 

I can sort of relate to this. I used to be a Ph.D. level researcher in math. Now I get too stimulated by even the clicking of a mouse, typing of a keyboard, flipping of pages in a book, or writing of a pencil to even focus. I often think about math by just visualizing the equations in my head, which is really difficult most of the time.

I used to play piano as a hobby. I bought myself an electric keyboard and self-taught myself. Simply loved it. Now my piano sits next to me, collecting dust. Just a few years ago, I recorded a song for my wedding.

It's weird because my disability (although my disease began 5 years ago) began right when I moved to a new home. It's like I died. My life is broken up into disabled and not disabled. I still cry about it, but less often.

Hyperacusis is completely unthinkable. Every day, I really can't believe this is happening. I didn't even know hyperacusis was a thing before. When I first started to develop it, very few emergency alarms went off because I assumed that if it was actually a serious problem, I would have heard about it by now. Turns out, it really is this fucked up. And ENTs really are clueless and give bad advice. It's absolutely unbelievable.

 

I'm so desperate that I would do anything to even generate a placebo effect. The scams don't do it for me personally, but I can definitely picture someone "not wanting to know" in order to muster up a placebo effect -- even if it's just for a few days or relief.

 

I returned from the hotel I was staying at to my family’s home - even inside the house a passing train used its horn and spiked me back to week 1 levels. In the interest of transparency I wanted to disclose this because although the Pramipexole helped me reach a state of near-quiet when there was no acoustic insult, I’m no longer enjoying that benefit. It seems like exposure to sound trumps everything else, and for fragile ears, this includes wholly innocuous sounds. Anything that does not kill the tinnitus signal outright leaves one susceptible to spikes from external noise, if one is fragile.

This has left me contemplating if my tinnitus is even a result of damage to the hair cells or synapses at all. Why should tinnitus be at its loudest from a temporary spike, when there has been no additional damage done, and if tinnitus is a phantom noise proportionate to a destroyed range of hearing? Why should a 5 minute drive or a distant horn bring tinnitus back to airplane turbine levels of volume when those cannot possibly be causing permanent changes? My audiogram is fine - there’s the common rejoinder about an extended audiogram - but how would that account for the temporary spikes which dictate the course of my life on a daily basis? Is it inflammation? Damage to the nerve? Hypersensitivity in the brain? All of these? None of these? Or one of 10 or more other hypotheses that hinge around a piece of anatomy we cannot image or even access until the owner is voluntarily deaf or deceased?

Cue opinions from the various tribes here assembled:

"It's hyperacusis - you need to enrich your nervous system with sound."
"It's hyperacusis - you need to protect your ears at all costs."
"This is classic reactivity."
"There's no such thing as reactivity."
"Trust me, you'll habituate. I did."
"I thought I had habituated but I haven't. I'm near the end of my rope."​

We have a rich oral tradition, if nothing else.

I'm tenacious and logical; I won't kill myself as long as there's a chance at improvement. I'm an invalid defined by experiential suffering; I should end this indignity and be at peace.

At least it's the happiest time of the day again. I can take my pills and dream.

 

All of us:

Glass Bones and Paper Skin (Emotional Video)

 

Lots of these scams are the same with the 30-45 minute propaganda video and same gimmicks. Haven't they caught on?

 

How close does the train go by your house, @GBB???

 

I wish I could punch the old me for taking life for granted. I had nothing to complain about back then...

 

So sorry you have reverted to bad tinnitus. You raise a set of very good questions. I think nerves and the brain might be playing a role, and memory as well. IIRC more than 90% of the brain is the subconscious part, God knows what happens there. Who knows, the noise stimulus might trigger a wrong prediction algorithm in the brain and you hear a jet engine. Or it could be a nerve problem.

I face the same difficulty from day 1. It started with a ear infection but then took a life of its own. It keeps getting worse and no one has any idea why so I'm running through the same questions.

 

What pills do you have?

So many "experts" here think they know everything. Is there any other health condition like tinnitus in which both doctor and patient don't know anything about it? I don't think so.

No one knows if spikes are temporary or permanent. No one really knows why you get spikes at all? Or what (noises/sounds?) causes them?

Imho, suicide is inevitable to me. It scares me in many ways. My left ear suddenly started having pain as I type this.

I don't think researchers will have anything noteworthy as a treatment any time soon. Most people have that fantasy because they need to cling to hope. If there was a chance at all, something would be leaked, incidents of such treatment helping someone and it would be posted here. In years of people posting here about treatments, nothing has been leaked here. No progress. Absolutely nothing.

 

It's more like one guy gets lucky and finds a vitamin that totally eliminates tinnitus, another guy takes psilocybin and the tinnitus almost completely disappears, another one has luck with some medication, another guy's tinnitus goes away all of a sudden on its own, but the problem is that there is nothing systematic and these seem like lucky shots. If another person tries the same things the tinnitus gets worse or nothing happens.

I am slightly more optimistic than you on treatments, I think some of the treatments we have in the pipeline will benefit us, the real problem is the time to get there. We are talking years. I can't face years with this level of distress and agony, even weeks look impossible without any improvement, and instead of improving I get worse. We have been so unlucky. I'm also very angry at the medical establishment for ignoring this condition for so long and being so slow. I mean, even now, the Hough Ear Institute is stuck with funding that does not make much sense, the new Retigabine is pre-clinical, all this stuff that could help us is years and years away. Frequency Therapeutics could help us maybe, and it's possibly the closest thing, but it's not a given for everyone that repairing ear cells will cure tinnitus. Who knows. I'm starting to become desperate as well, actually I have been desperate and in agony too long now.

 

I said that before and I'll said that again.

It's ridicolous that ENTs and audiologists are so clueless about tinnitus.

Hearing loss and tinnitus are somewhat combined, some people say even hidden hearing loss has its role there.

But that still doesn't explain why some people have fine audiograms, fine extended audiograms and have no problem hearing speech in noise yet they have tinnitus.

It still doesn't explain why some people are so hard od hearing yet they have no tinnitus.

It still doesn't explain why sometimes it stays, sometimes it goes away, why some people have reactivity, why some people have hyperacusis, why some people have spikes and some do not.

When you have a cancer, you know what ground you are standing on. You have empathy, full support and attention od whole medical universe.

If someone could cure me from that bs in exchange for my legs, I would cut them off by myself with a freaking butter knife.
When I tell that to others they think I am going nuts, but it's really rational I believe. At least I would have some understanding from people.

This whole tinnitus thing goes WAY beyond some simple ringing in your head. It's completely new level of suffering.

 

I like to think I have a modicum of common sense and such claims that a vitamin cured someone's tinnitus makes me extremely skeptical.

I am pessimistic but at the same time, I think it's probably really difficult for 'cure-all' treatments since we are all different. How many of us describe similar symptoms etc.?

I am willing to consider treatments may help mild and moderate tinnitus sufferers but what about severe tinnitus?

And which treatment will do it? A drug? How much "ear repair " is needed? What about science articles that claim tinnitus (or ear damage/hearing loss?) also has impacted various areas of the brain? Will some restoration of hearing and/or hair cell repair (what about nerves) create a reset in the brain to turn off the tinnitus?

It seems so complicated and hopeless to me. :-(

 

PeteJ's comments remind me of that scene in the original movie version of Capote's "In Cold Blood" where in that seedy Mexican hotel room Perry is holding an archaic map of the Gulf and blathering to Dick about his plans to bring to the surface vast quantities of gold from sunken Spanish Galleons.

With total exasperation Dick rips the map from his hands and says, "Quit jerkin' off - there ain't no buried treasure."

After having had this for six years and nearly 11 months, I frequently tell myself to "Quit jerkin' off - there ain't going to be any life-changing, surprise call from your audiologist about some new, amazingly effective treatment / drug for this."

 

Not only it moves the jaw, it can also change the angle of the upper palate (not widen it but make it more like /\ if you get me). It also changes the muscle under your chin and that is just a domino effect, everything changes. Your lower jaw can be pushed backwards, you name it. If I were you I would stop doing it (if you are now) and visit a physiotherapist and a TMJ specialist. If it’s a nerve issue and dudes end up finding it and treating it, tinnitus goes away. Chances of that happening is about 1%. Might as well try.

 

I don’t mew anymore but how would hyperacusis be caused by mewing. Sorry my timeline doesn’t really line up with yours.

 

Best guess - you will get your ear repaired via hair cells or synapses - then over the course of 12-24 months your tinnitus will reduce - it may not resolve but it should get a lot better. The brain needs time to reorganize around new input. You can see this principle at work in stories where someone has had earwax removed from a blocked ear with otherwise perfect hearing - it often takes up to 2 years for the tinnitus to resolve (though of course it can happen much faster). Chances are the longer you have had tinnitus, the longer the improvement will take as the brain has rewired itself in a shitty way. As science gets better crude therapies will become more diagnostic-focused and targeted, and results become more meaningful/reliable.

I don't think we will have a 100% cure even when doctors can replace your cochlea with a perfect artificial copy - by that I mean there is always an edge case where something can go wrong with a particular individual that eludes the reach of medicine.

For those with purely brain-based symptoms, where input is not a problem, I expect this will take much longer.

That being said, as time goes on your odds improve, and they will likely massively improve with the first wave of regenerative medicine currently in pipeline.

 

And until this changes don't expect any regenerative medicine.

We don't live in a culture that is appreciative of science. The only bio company that has a chance of being ready in under five years is Frequency Therapeutics. The rest have much longer to go and people here are pretending regenerating hair cells will solve everything.

 

Not a single soul, any animal, any human being, deserve such suffering. It's incomparable to anything else.

I wasn't warned about it, no one talks about tinnitus. I just wan't it to stop. Habituation won't save me.
I didn't even do that much, I just listened to earphones for 2 years and sometimes mowed lawn without protection.
I am 18 years old and my whole life is destroyed by it, it's so unfair. I used to not be very religious, but now I pray whole days, please God end the suffering, I'll give everything. Take away my leg, take away my eye, but please, stop that.

 

Why does OTO-413 not have a chance to be released within 5 years in your opinion?

 

Because he's a provocateur.

 

Didn't it just start its trial?