Suicidal

2 years ago this past week marks my anniversary with my accident causing this deep spiral that has destroyed my life. Finally today I had to brave LDL testing and the beeps are imprinted on my tinnitus now. My audiologist's shift in attitude vs. 2 years ago really hurt. I wish I could have any other disability. The social aspect of not being believed or taken seriously, being so defenseless that I can't fight back on anything because I can barely communicate, how I need to band together with the countless who suffer in the same way as me but that our word still means nothing in the face of this pseudoscientific bunk... it's hell. You'd think dragging yourself through hell would earn you an ounce of empathy, but it doesn't.

If I have to hear that this is all thanks to my negative relationship with sound and all because of my fear and not thinking noise is positive, I don't know what I'm gonna do.

I'm sick of going to these appointments. They make me immediately suicidal, because it just reminds me that the entire world is against me and everyone else like us. I don't see the point of continuing.

 

I really try to stay positive, I really do, but I’m also realistic, I’ve absolutely lost it all to hyperacusis, I could easily live with the moderate tinnitus I have right now, it’s the goddamn noxacusis that’s driving me crazy. My tinnitus has been getting louder despite isolation, which is worrisome. My noxacusis just refuses to improve no matter what I do. I’m hitting close to a year and a half with this condition and I’ve only gotten worse. How am I supposed to stay positive when I haven’t improved at all?

I used to have it all before this condition, tons of friends, a good dating life, a decent job, a good place to live. I’ve always struggled with health issues, particularly nerve pain, and the nerve pain has always kicked my ass, but despite that I was still able to do things to distract me.

Now with hyperacusis I’m literally a living corpse, I lie on my dam bed all fucking day and seldomly leave my room, the furthest I venture is my porch where I stare at the trees and lament on how I lost everything that gave me joy.

 

What country are you from? I wanted to get on disability but I already know it’s a battle to lose. Being that it’s an invisible condition it’s going to take way too much effort to qualify for it. I know you applied for disability, right?

 

In the US. I am in a state where the approval for disability is a bit higher but the monthly income is barely enough for the high cost of living. I noticed in your state the approval rate is about 39.1% but with $1,281 per month. So may be tricky but perhaps more livable if you do go for it?

SSA is so strict with their rules. Even if you do have certain disabilities, they may only accept you if you experience the side effects they approve. I heard it's easier for veterans to get it because of their history of noise exposure.

Hyperacusis is like, a double invisible illness. Can't see it from the outside, plus no test that can prove it's happening other than LDL. My lawyer basically said I had to bite the bullet and get testing just so they had any clinical proof to go off of, because SSA won't take anecdotes or self report. He wants to build my case around the fact I can barely speak or sustain speech, since that is a thing SSA counts as being disabled. As for people with other types of hyperacusis who can speak, I'm not sure how they'll present it. And who knows how long the appeals process will be. Seems we've all heard of someone in the US who has been fighting for years.

My lawyer said this was a first for him though and like many, never heard of it. Took me awhile to find one. I emailed 5 different people but as soon as I explained more about hyperacusis I got ghosted, or they didn't respond to emails vs phones. I used a website called Atticus that presents your case to disability lawyers and then whoever is interested takes you on.

If you decide to go the Silverstein route, they do require LDL testing before and after the surgery. If you were to apply for disability, you could probably use the records from there on top of Silverstein's knowledge of hyperacusis actually existing. Surgery or no surgery though, it seems LDL is a necessity for disability proof, which sucks.

Disability really is a scam in this country though. I'm lucky enough I qualify for SSDI vs. SSI but it's still living off peanuts. I was just about to finish my education before hyperacusis hit, and I didn't have time to prove I was disabled for the college I was going to attend for them to accommodate me. The degree I was going for most likely wouldn't have allowed remote work so I just didn't bother. My backup plan is to try to go another educational route that can allow me remote work, but still, just reading so many people here saying they still have to suffer through voice calls for work makes me hesitant. I also feel like, despite the Americans with Disabilities Act, of course employers are going to choose a not disabled employee over a disabled one. Discrimination still happens.

 

It's very hard to get disability for tinnitus. You have to get it for depression, anxiety, suicidal ideation, OCD, schizophrenia, etc, etc (mental disorders) So basically you check yourself into the psych ward, then when you get released you get your doctor to prescribe you antidepressants that you flush down the toilet, then refill your prescription. After 1 year of this, you will qualify. Tinnitus and hyperacusis are "add-ons" to your application.

 

I was originally going to try for the mental health route because I have a big history of that which I can easily prove, and even applied for SSI in the past because of it. My lawyer advised against it. I am almost 30 and he says at my young age, disability for mental health is very difficult to get. I did mention the usual methods hyperacusis and tinnitus sufferers go like you and many others mentioned, but he thinks the speech route is best and mental health would be pointless. Even so, I'm on a waiting list for a psychiatrist come this summer for antidepressants as advised by an ENT who claims they can treat hyperacusis (doubtful). If they do something, cool, if not, I'll flush them and hopefully that will give them some evidence that this isn't easily treatable.

 

Have you tried this before? Seems like a good approach.

 

Well by all the replies it seems like I’m screwed and the chances of being able to get disability are slim to none. I won’t risk getting any more test done because I’m already in excruciating pain. I can only imagine what that LDL test would do to my ears.

 

I wish my tinnitus didn’t hurt physically. If it were only a sound — even an obnoxious one — that would be heaven, but alas, that’s just not the case. It feels like a sadistic helmet glued to my head, one of torture, one that’s hardwired with electricity. So I’ve lost my life. There’s no “living” in this current state. I now know what it’s like to be on death-row and face the infamous electric chair. I’ve watched a lot of true crime documentaries in my life, never dreaming that I, too, would be fated to face that chair — but for a lifetime rather than a mere 2 minutes.

 

I feel this all so big time bro. I got bad tinnitus in January and then got really bad hyperacusis in April and I am just dying with how loud and reactive tinnitus is. I don't know how much longer I can push through this hell.

 

I feel your pain my brother. I’m just a shell of my former self, I can’t believe the place that I have reached. It’s a new level of desperation and sorrow, how cruel can this damn world be?

 

Trust me, I've been around for over a decade now on this forum (since its inception) and spoken with hundreds of sufferers.

It works better than simply saying "I have tinnitus". Generally disability boards like to see that medication was prescribed. You can't just say I got an untreatable condition therefore I refuse any medication so give me my disability. That's not how them system is set up. Also many jurisdictions will refuse a first time application in order to make it more difficult for the applicant in hope they abandon it.

 

Nice to know. Perhaps I shall take this approach. I refuse to call myself disabled, but unfortunately I have reached that point, I am completely disabled and destroyed.

 

You would also need a psychiatric's statement confirming your suffering. This is because psychiatrists are trained to know when someone is telling the truth and it weighs a lot with d/a boards.

It's not easy journey but it's doable. Good luck to you my friend.

 

Hi @Jerad.

To answer your questions, my tinnitus is loud and 24/7. By loud I mean I can hear it over most everything, shower, ocean etc.

My tinnitus has not improved but my reaction to it has improved dramatically. Over the course of a day I fade in and out of giving it attention or having it give attention to me. I no longer wish to die and generally am positive and upbeat... touch wood as I say that.

I had never used Valium until tinnitus and it helped me for the first year greatly. There is something about this drug that relaxes the Tensor tympani muscle, eases hyperacusis and seems to lessen the aggravation of tinnitus. I like to think of it like a sledgehammer to the nervous system. A pretty blunt drug but effective in knocking a person out when their nervous system is in over drive.

On benzos, and I took a shit load, I could sleep, I would cry all the time (I am easy to cry when happy or sad), was volatile with my moods and had anger and often slurred my speech - not ideal.

I haven't taken a benzo in nearly 3 years but may do in the future for sleep. I am going to try the straight edge route for the time being.

So my brother, "whatever works" as my good friend and mentor @Jazzer once said is the way to go.

If your nervous system is shot, lean on a benzo until you can get on your feet again.

Let me know, us know, how you are keeping and what protocol helps.

Sincerely,
Daniel

 

Hi @Daniel Lion, did you take Valium every day during that year and what was a typical dosage? So glad you're doing better.

 

Thanks for your support.

And to answer your question, yes, I took it everyday.

First about 10 milligrams to get to sleep, and then 10 milligrams before going into the class room. I took it everyday and worked up to 30 - 50 milligrams a day. That' s a lot, maybe even 60 mg if I was going for it. At 80 milligrams I could feel my heart wanting to stop and was close to overdosing, at least it felt that way.

Start at 5 milligrams or 10 milligrams for sleep and don't push your luck. I have an addictive personality, have a high tolerance to medications, and like to be bludgeoned. I was stupid enough to go cold turkey to get off Valium and new nothing about the drug or tapering. If you do take a benzo, just do a slow taper to get off. Dr. Ashton is on the internet and has a manual on how to do this.

Good luck @tpj.

Keep us posted on your journey for better or worse.

Hugs xxxxxxxxxxxxxxxxxxxxxxxxx

 

Man or Woman Against the World: Death of a Perfect Home

A perspective on tinnitus and hyperacusis...

By @Jerad



We live in a universe of order, one where laws are defined, structure’s absolute, and things miraculous prevail. Planet Earth, with all its harmony, provides a home for life, a safe haven where we belong, a place where we can share its resources, breathe clean air, and experience something that seems so simple, yet magical at the same time — that ability to breathe effortlessly. And between every breath inhaled and exhaled, we’re reminded of something quite profound: that this creation works so efficiently because it’s one that’s ruled by edicts, and that Earth itself was truly made for us.

In the known universe, there is no other place where that can happen — breathing / existing without assistance or intervention, like the aid of a special suit or spaceship that mimics Earth’s atmosphere, providing the right amounts of nitrogen, oxygen, carbon dioxide, neon, hydrogen, and pressurization. When we leave this planet, we’re at the mercy of that suit or vessel, and we’ll die without them, guaranteed. I believe Earth’s so special, in fact, that it’s likely the only place we could ever survive naturally; that there’s no other planet or moon in the entire cosmos where we could exist freely; realizing that the atmospheric conditions have to be so precise to support our way of life makes the Earth an inseparable part of the human experience.

Earth was truly made for us and us for it. That’s its beautiful side. And it’s almost supernatural that such a place could even exist when you look at the universe as a whole. What’s out there, beyond Earth, is what’s really “normal” in the big scheme of things — the desolation and hostility that rules the universe is the common theme you’d expect to see everywhere. But this little planet is truly unique, a miraculous diamond among many gemstones. It doesn’t fit-in with the rest of existence.

However, as beautiful as it is, things can take an ugly turn, and we can lose our place here. We understand that — those who acquire tinnitus and hyperacusis at their most extremes. We are suddenly faced with eviction, plunged into chaos and madness, an unrecognizable realm that’s inhospitable. The world turns vicious. Everything’s alien. Nothing seems familiar. We no longer recognize the spaces we inhabit. The sounds on this planet become collective-enemies, and the phantom noises that churn within our ears and minds. We’re allergic to them by and large and tormented by the tinnitus. We no longer feel that we belong here, like we’re incompatible with this world. Beauty is replaced with horror and joy with sorrow. Life becomes “man or woman against the world” — it’s too much to take on. Sufferers often describe themselves as extraterrestrials, feeling like they’re on the wrong planet. I totally feel the same. So suddenly, Earth becomes the mirror of its counterparts, those realms that lie beyond its atmosphere, with all their lifeless parts, losing its special place in the cosmos. It’s no longer that home of comfort, or that great protector it’s meant to be.

When they’re super severe, we lose everything to these ailments: the ability to be around loved ones, interact in meaningful ways, be a part of the society’s order, work, go to different places and travel; experience happiness. And we’re not even believed by many. Sympathy is not a shared experience; disability rights are not granted. It’s not just about being sick either — we literally lose everything in the most ruthless of ways. We’re holed-up in our homes, often uncomfortable there, even. The sounds that lie beyond those walls still intrude, and the tinnitus holds us captive. It’s a claustrophobic’s nightmare, where there’s nowhere you can go or truly hide. When leaving our homes, we’re forced to wear extensive gear to try to exist in a place so foreign. It’s like suiting-up on the Moon or Mars.

These conditions are uniquely diabolical. They don’t allow you to live, but they don’t allow you to die either — ever — since they won’t kill you. They’ll rob you of everything except your ability to breathe, ironically. They lobotomize your life, making you an empty shell, a carcass that’s somehow still alive. They leave you in a world that wept away its beauty, shed its color, shows its light no more; someplace barren, not robust; a place where shadows rule your life, darkness takes your heart and soul; a place where memories haunt your essence as you wish for second chances. Oh, what we’d do for second chances… we can only dream.



At their worst, the heinous nature of tinnitus and hyperacusis leave us feeling totally isolated, but let us call upon God for mercy. I believe he created this universe. And we want to be part of his creation. We want to belong again. Let us pray diligently and ask for second chances, opportunities to take part in this world once again — so that we can live in meaningful ways. Extremely severe tinnitus and hyperacusis are not “living.” They’re not even suffering. It’s one thing to suffer and another to experience endless torment, and become an alien to our native world. Let us implore God for healing to make life reasonable once again.

With these conditions, nobody commits suicide because they want to. They don’t want to die. They do it because they feel their lives are already gone, like they just can’t live anymore, the walls are closing-in, or they’re drowning in the water with no lifeguard in sight. They feel absolutely hopeless, that they can no longer take part in the beautiful side of this world, and they’re just devastated. They feel they’re being evicted from the one and only home they’ve ever known. But let us beseech God for help! He may be our only hope. And I have to believe he’ll help those who truly seek him.

 

Very nice post, except for the god stuff at the end!

 

Solid post.

 

It's a multiverse. But even in our branch universe, we are a small planet on a small star system on the peripheral arm of an ordinary galaxy. The milky way alone, our galaxy, has 100 billion stars. There are probably 100 to 200 billion galaxies only in our universe. How likely is it that the earth is the only life permitting planet? There are many explanations to the Fermi paradox.

As for any world that allows its conscious inhabitants to experience catastrophic tinnitus, hyperacusis and noxacusis, among many other horrible conditions, I'd say, with the Smiths (Asleep) and with Grant Morrison (Doom Patrol):

There is another world
There is a better world
Well there must be

 

Child abuse is horrible. I agree. I blame my own tinnitus ultimately to child abuse. The shadow of child abuse is long and covers your entire life. It doesn't just stop and go away. I wish children's aid had been informed, I wish I was taken out of the home and put up for adoption, I think my own life would then have had some chance at sanity.

The person I work with is stunned at the abuse I have received, and my clinical psychologist tells me I'm the most traumatized person in her practice, and she does the Afghan war vets.

We search for feeling better, to compensate for something we did not receive (love/attention/nurturing), which goes into escapism, which includes excessively loud music, in an attempt to kill the pain. In order to exit the pain, you must enter into it.

I would say therapy has improved my coping with tinnitus, and I would have to say I'm a member here for quite a while, I can search my own posts and marvel about how resilient I seem to be... so many posts about how dismal things are/seem, and yet I somehow manage to keep on ticking.

Unfortunately, the initial damage was done, and leaves a scar, although I would say I'm emotionally/psychologically normal now. I do have a chronic neuropathic pain disorder, well a lot of people have that. What my analyst says: I was complaining I had no shoes, until the day I met a man with no feet.

And I'm still working full time with overtime, I would have to say that it is getting progressively more difficult, and some days I wonder how I manage to keep going, but I do... I had a very good coach from the Philadelphia ATA who really took me or carried me through some brutal episodes to tinnitus spikes...

EDIT:

And just to follow up, so I don't get people all too depressed here, Monday was not a great day for me at all, I felt pretty dead and got just about zero done. Monday night I decreased my CBD oil from 100 mg to 50 mg. Cannabinoid has a "therapeutic window" which means you take a bit, it's good, a bit more, a bit better, then you reach the peak where you have maximum effect, when you exceed that dose, the effect now goes in reverse, the cannabinoid finally has no effect (except to spike your tinnitus of course). So I actually had a good couple days, by cutting back on CBD.

Mind you, I increased my Agomelatine from 25 mg to 50 mg (potent synthetic melatonin), and I increased my Prometrium (and I'm a male here, so Prometrium is normally only given to a male to treat prostate cancer) from 200 mg to 300 mg. Prometrium is an expensive med, I take mine p.r. (per rectum) which increases the effect (more absorption, bypass the liver). Prometrium is beneficial for sleep.

And... I switched my night time sound track from restful rain, to Enya. I had my Enya up on the cloud at one time, so everyone could access it. My daughter converted the CD to FLAC, then used Audacity to do dynamic compression, and adjust the volume so it is pretty much a constant volume. normally music has loud and soft passages, my daughter wanted to keep it the same level for me, which she did.

I first tried the Dalai Lama sound track, which I used to listen to, and I discovered the tinnitus must have worsened, because I couldn't tolerate the Dalai Lama (tinnitus was too intrusive), but the Enya was perfect. I use two FLAC players, I have one playing Enya in FLAC format, and the other Restful Rain, converted to FLAC format. FLAC allows you to fit 9 hours on the same disc, so you don't have the sound of the player stopping at the end and reset to beginning, FLAC is a full lossless audio codec, so the quality of sound is pretty exactly the same as listening to CD.

 

New noise in my left ear has stayed for 5 days now. I know it's permanent, new sounds never disappear for me. Prednisone is doing nothing.

What happened? Couple of metal pots and dishes fall out of my closet... A thing that happens for BILLIONS of people everyday, a thing that shouldn't do you any harm yet it destroys me in a split second because it's loud for a second or two.

What's the point of living like this, with constant fear knowing that further worsenings are unavoidable and IT WILL GET WORSE as any disease on earth without proper treatment.

I fucking can't bear it, I can't. I'm 24 years old, my tinnitus started at 13, my whole life is dictated by tinnitus because this freak is getting easily worse by any loud situation, I can't have a social life. This weekend a lot of my friends from all over the country are meeting up for a whole weekend, they will be drinking, having fun, enjoy themself, laugh, HAVE A LIFE AND WONDERFUL MEMORIES.

And what I'll be doing? The same as always, cry, listen to my new wonderful fucking sound inside my left ear thanks to metal pots and dishes, not meeting anyone for years now, live year by year in constant isolation and this sound, I WILL FEEL how my life is slipping through my fingers at my supposed "prime time". They will have a fun, I will have a torture. Fun is reserved for normal people, for us the only thing left is to suffer.

FUCK THIS LIFE, because it isn't a life. It's vegetation, it's inhumane torture.

The last 2 years for me is the last straw. I got 3 worsening, toxic breakup, no possibility of helping myself, just endure the torture or end it all. Those are only options.

Like I said, I'm 24 years old and my 70+ grandmother has more life inside herself. She goes to her boyfriend, she still like to party at the senior club, she still see her friends, SHE STILL LIVES. She's half deaf and DOESN'T HAVE TINNITUS. How bad it has to be that you're jealous of your 70+ grandmother's life?

 

100%.

 

@Greg Sacramento, I always appreciate your help. Thanks.

Is there any foods or supplements, or anything you’d recommend taking to balance my serotonin properly and safely?

Also, how long do you think it would take for these zap sounds and feelings to clear up? It’s been about 5 months and they’re the same. I did an extended audiogram at super low decibels recently (around 15 dB) and that seems to have spiked them more. My right ear is zapping more now, too, and the left is more aggressive. Any thoughts on that? Thanks.

 

Moving head slowly instead of eyes is a difficult task to do all day. If dark lens reading glasses don't help, then keeping serotonin at a minimum might help.

"Magnesium concentration has an effect on serotonin and NMDA receptors. A magnesium deficiency happens with stimulation of excitatory neurotransmitters such as serotonin and acetylcholine, due to overactive NMDA receptor activation. Magnesium also enhances the sensitivity of the autoreceptor, 5-HT1A, which would help to keep serotonin at a lower baseline."​

A magnesium deficiency can happen with tinnitus and with tinnitus. Magnesium is needed for hearing protection.

"Gut serotonin accounts for between 95-99% of the total serotonin in the body and brain serotonin 1-5%, however, in abnormal conditions, up to 60% of the serotonin can be synthesized from tryptophan in the brain. Also, when the gut is irritated, gut serotonin production is dramatically increased."​

Try liquid magnesium - 100 mg three times a day and 100 mg thirty minutes before trying to sleep, but also some of the gut recommendations in this article.

60 Best ways to lower Serotonin (2020 update) » MENELITE (men-elite.com)

One other therapy mentioned in another article with zaps is a cool bath - just for a couple of minutes daily, if you can stand cool water. Myself, I would probably pass on this, as I can't stand cool water.

 

Which Magnesium do you recommend?

 

Did you qualify?

 

I get Magnesium Bisglycinate. Any brand. I don't know if it helps but I figure, it can't hurt.

 

The problem is lots of people have a physician who will refer a psychiatrist but what if one of those people who has a doctor WHO WON'T?

From my experience, doctors in general are horrible people - some of the most cold-hearted and callous people around (up there along with cops and politicians) - which is ironic considering their chosen profession.

As some people said, it seems easier or an easier process in various American states. But, what if your family physician is not accommodating and not supportive? What if you don't have a psychiatrist in your corner?

I'm nervous about an impending appeal - my last chance. I don't want to repeat this entire process again - it has taken about 3 years?