Suicidal

I’ve had some good days but more bad ones. It seems like there are maybe 2 things that I can say for sure have transpired over the last 7-ish months.

1) My Eeee has changed to a combination of lower tones, tssss, wawawa, and a sound like a strong wind howling. I rarely if ever hear high pitched tones anymore, though it happens occasionally.

2) Although marginally, my noise tolerance seems to have increased a little. I can listen to music on external speakers louder, though certain kinds of white noise and fans still spike me without fail, even at very gentle volumes. Clearly I have some sort of frequency specific issue - either hyper activity in parts of the ear or the brain, or both.

Overall I’d say things have improved 2 points on a scale out of 10 in 7 months, though there are many nights I still break down and cry, and I live a far from normal life. Some days in terms of volume I’m easily still at a point of suicidal ideation e.g. nothing can mask it and it feels like my head is absolutely filed with sound. I’m 28 and instead of blazing a path in a corporate career, I live with my parents and wear earplugs when I shower or when they vacuum...

It’s tough/torture. I guess I’m just persisting in the belief some therapy will help me in the future, the same as many here.

 

And the Mirtazapine/Amitriptyline combo? Are they working? Any anxiety? Any Benzos?

Best

 

They help me sleep like the dead. Without them I’d probably never get any sleep. My mood is substantially improved versus when I wasn’t on them - I literally think I’d be dead without them. They don’t do much for volume though.

I take Xanax about once a week. On days when I take it the volume is substantially reduced. I wish I could take it every day because it works really damn well.

 

That's good to know. And no hangover effects? Did you start on them both at the same time - or did you try one and see an effect? And was the combination prescribed by a doctor?

 

I started them staggered, and yes it was under the care of a psychiatrist. No hangover.

 

I read an interesting article with some good evidence that neuron atrophy as opposed to hair cell loss during "normal" volume events is likely the reason our tinnitus gets worse and sometimes slowly better.

Apparently it happens really slowly, nerves dying up to a two years in mice after the noise insult (assumed to be longer in humans), they sit there un-synapsed in the meantime, but if they are convinced to be "re-synapsed" and stretch back to the hair cell with neurotrophins to convince /guide them, the problem is resolved. Also talks about hidden hearing loss as the basis of your "maximum transmission volume" being reduced, and how we can all pass hearing tests (specifically why it would never show up). Would also help explain why Prednisone helps when it really shouldn't (almost none gets into the cochlear perilymph unless you're taking levels akin to having an MS attack).

M Charles Liberman: Noise-induced and age-related hearing loss: new perspectives and potential therapies

So let's not be offing ourselves until these neurotrophin factors can be injected into our ears. Too bad there's not a lot of data on diets / habits to convince the upregulation of these factors. Chronic stress & depression from what I've read won't help, but exercise will.

 

@jeremy06 started this thread on October 18, 2018.

He wrote the following then.

It's now been more than 2 years, and he is still alive:



I wanted to post this so people understand the nature of the beast. Suicidal ideation is not uncommon, but committing suicide is.

Most of us here saying we want to die will be alive 2 years from now, just like @jeremy06 is.

 

Is this related to any of the pharmaceuticals currently in the pipeline or something completely different?

 

These would be your synaptopathy drugs: OTO-413, PIPE-505 and Hough Ear Institute Pill.

Synaptopathy is probably more common than hair cell loss for at least more mild noise injury.

 

Sorry bro. I'm in the same boat except I have a wife and kids. I went from high dollar MBA to fucked in under 60 seconds.

It’s tough/torture. I guess I’m just persisting in the belief some therapy will help me in the future, the same as many here.

 

I just want to be able to take my kids to the park or even play a simple board game with them without horrific ear pain. I know stress and depression can make things worse, but it’s impossible not to be depressed when I’ve lost so much and nothing I try helps. My ears have ruined my life, and I feel so hopeless.

 

Sorry to hear. I had to turn down MBB consulting because of this shit. Even if I ever heal, it's already changed the course of my life irrevocably.

 

The worst feeling is lying in bed and it all hits at once. Sometimes I’m able to block out my horrible reality and just be present but when all my old memories flood in I realize how much life absolutely sucks now and how time is just being wasted. These are supposed to be the best years of my life and I’m NEVER going to get this time back. My one shot at life and I’m disabled in my twenties to the point where I can’t leave my house. I’ve developed PTSD from this entire experience.

 

Have any of your doctors ever looked into Hashimoto's disease? It comes with a long list of oftentimes seemingly unrelated symptoms (some of which can be tinnitus, headaches, vertigo, ...) so that, if you're lucky and the thyroid aspect is caught, you'll end up with some kind of thyroid medication, which, at least, helps with one/some of the symptoms, if not, though, it'll eventually boil down to some kind of psychotropic drug, because <sarcasm on> if there's nothing wrong with you physically it's got to be your psyche that's at fault <sarcasm off>.

I'm not trying to give you some kind of diagnosis here, but sometimes many individual symptoms might be part of a bigger picture and are worth being looked at as a whole.

 

Sometimes I wonder how I'm not more suicidal. This has been getting only worse for me. I can't leave my house and inside I try my best to keep silence... I don't know what to say... I anticipate that my tinnitus will only get worse because that's what it's been doing until now.... I wish good luck to my future self, cause he's gonna need a lot of it.

 

I don't even care about my tinnitus anymore. The horrible garbled noises of running water, wind, any kind of "white noise" has truly stolen my joy. The only grounding thing in my life was sound. I used to stand outside by the river and close my eyes and hear the wind in the trees and tall grass, the running hum of the river, birds in the trees and instantly feel calm and peace. Now it all sounds hellishly distorted.

I finally got a refill of my Xanax. Any idea if I took the whole bottle it would for sure kill me?

30 pills .5 mg each.

 

@shelbynn, please don’t attempt to swallow any pills or otherwise hurt yourself. I’m sure you have family and other people who love you. It’s also important to try and be kind to yourself over this period. I get that sound distortions are crushing. I’ve been a musician for most of my life but now I struggle to hear the music... at times all I hear is the distortion. What I will say is that the distortions can get better. Ears can take up to 2 years to heal and we are in this for the long haul. At the onset of my symptoms I turned my laptop speakers on low, started to move them up at 20/100 and could not hear the music at all, not a solitary note, only the distortion. This has improved over a period of months but I’m far from out of the woods yet.

It’s also worth noting that many people vent about suicide on this thread, but they’ll likely be back later. Also, many suicide attempts fail. Life can always get worse and you don’t want to end up a vegetable or paralysed with only tinnitus and sound distortions for company. I know this is a dark point but it’s worth keeping in mind. What if you’re completely cured in 12 months? I think the best option is to wait it out and protect your ears.

Sending much love to anyone finding themselves on this thread,
Simon.

 

It will not, no need to try it.

Sorry you are feeling this bad. I don't know for how long you have had this sound distortion. The only thing that has improved for me since it all started is my sound distortion. My tinnitus, hyperacusis and noxacusis on the other hand has deteriorated massively.

 

I am exactly where you are. I finally brought my bottle of 150 of .5mg of Clonazepam to the bed with me from another room tonight. I have Oxycontin too. To be sure, I should mix it with alcohol as well. Benzo alone will not kill us. Problem is I am so extremely nauseous I do not think I can hold the alcohol.

Life is nothing but extreme pain of sound, screeching tinnitus, tremors, anxiety, depression and body aches.

Destroyed ears, benzo withdrawal and now also opioid withdrawal just don´t mix.

Right now my father is taking a shower far away from where I am at, still the whooshing sound of water going through the pipes is killing me. How am I supposed to live like that?

 

Hi Simon,

Thank you for your kind words. I'm having a really, really bad night. How long have you had your distortions total? I'm really happy to hear you're having some improvement. After reading everything on this site it seems that things like tinnitus/hyperacusis/distortions are battles one by months and years not days and weeks.

I'm so scared this is never going to be better and this is the rest of my life. I used to sing and play piano. Music and sound are a huge part of my life. Losing that would be losing everything for me. I have very few joys in my life. Sound used to be a major part of my coping with PTSD. I just feel like I'm not meant to have peace or joy.

Please keep me posted if you start seeing more improvements in your sound distortion.

Shelby

 

That's the thing with all of this stuff. I feel like waking up everyday in the middle of a battle field and I'm so exhausted. This is seriously no way to live.

 

I'm so sorry you're going through this pain. I don't blame you for feeling the way you do at all. I don't have anything encouraging to say because I'm in the same space as you completely. I don't know if this will ever get better for either one of us.

In times where I've been suicidal in the past I've always been able to tell myself that this isn't permanent. I can't say that to myself anymore. This may well be my life. I don't have hope and I don't expect anybody here suffering to have hope. All I can say is stay curious. Sometimes in the darkest pits I've been in, like the one I'm in now, I used to always stay curious. I needed to see how the story unfolded, even if it was tragic.

But I'm so tired and I don't want to know what tomorrow is going to bring. I don't even want to get to tomorrow.

 

I am just so ready to give up. Dysacusis makes life impossible to enjoy.

 

Sorry bro.

 

Ok I need to bitch here again. Not about tinnitus or hyperacusis. But I have all the classic brain tumor symptoms. I'm not sure if my tinnitus and hyperacusis are related to it, might be, but this is something I don't know how to process at all. My doctors are very concerned too.

 

If they suspect a brain tumor, have they ordered an MRI to rule it out? I know so many are terrified of MRI machines but it can be done. I just had one two weeks ago. Double protection.

 

I had a CT scan done even though my neurologist was pushing hard for an MRI but I may actually need one.
My tinnitus and hyperacusis/dysacusis are on the back burner for now but they're still depressing as they robbed me of my coping mechanisms. Fuck man

 

I understand. I have severe OCD and have struggled with it since I was a teen. I finally had it under control and now this shit.

 

I could have written that.

 

So sorry to read this, and so sorry for everyone else on this thread. It's excruciatingly painful.

Just to say that benzo withdrawal can take anything from 6 months to 3 years.

There is a guy who was on Clonazepam for 15 years, topping at 6 mg and he went cold turkey. He went through literal hell, suffering increased the first six months, then it kind of diminished from month 7, and at month 14 he started to feel markedly better.

How long have you been in withdrawal? It might be worth waiting a couple of months more if you can manage that. I know it's a hour by hour hell so I know it's a lot to ask, really a lot.

@shelbynn, so sorry to read about this. I sympathise. Xanax won't work, don't do that, benzos can give you hell with withdrawal or tolerance but they won't kill you, that's why they have totally replaced barbiturates. They are extremely "safe". As I was saying, I sympathise. I don't have distortions but my tinnitus is so extreme now that the electricity is painful at a physical level. I cannot stay on the bed or rest. I get flashes of my past life but attached to them is a feeling of horror or extreme anxiety, like PTSD flashes. @Orions Pain is right, this @#@!!%& can give us PTSD.

@vermillion, so sorry to see you here too. I always hope a miracle happens and we wake up free of these horrors, or with much diminished symptoms.

@GBB, sorry for your missed career man, you threw everything at this horror but like many of us could not find something very effective. My specialist told me last year "look, I see a lot of these cases. Not just severe tinnitus and ear symptoms, but also burning skin, phantom limb syndrome etc. At some point the brain has enough and lets go. I think it will happen to you too". This is a nice guy and I think he meant it but to me it felt like a "I give up on you" if I ever saw one. I don't know. Once, one year and a half ago, I was seeing a ENT nurse for ear cleaning, I asked her, "do you know some specialist I can see? I saw 6 so far, but I'm willing to see anyone if they can help". She told me "I'm sorry, love, nobody can really help you with tinnitus, stop looking for a doctor because you won't find anyone". That was another nail in the coffin. How are we supposed to go on when there is so little hope? FX-322 is still far, OTO-413 so far, I feel so sick given the urgency of suffering and the slow process all these companies are following, no one can tell us worsening cases why we are worsening.

I get the feeling, @Gabriel5050 . This is maybe unfair to Frequency Therapeutics, they are trying to move fast, but the Hough Ear Institute institute? Come on guys, speed up, people are literally on the brink of the abyss.

All of you on this thread, I'm sorry for all you are going through. I think of you often and I really hope your situation will improve at some point. We have suffered enough.