Suicidal

I know, Capstan. I'm trying to taper off benzos after I tapered pregabalin, but the tinnitus is maddening. I can't stand it. I probably have to taper more slow. I can't sleep.

 

I don't know why I even use Xanax. It only gives me few hours of sleep. Do you still work?

 

Ok, after Coronavirus is done.

 

Can opening a jar cause ear pain? My left ear pain is so severe right now. I don't know what increased the pain again.

I am so tired of this. I want to fucking die!

I can't get any advice for this.

 

Tinnitus rules my days and owns my nights. I have lost. I now must accept my suffering to prevent the destruction of others. My only resolve is to pray He provides that mercy.

 

I managed to hang to work so far but barely. In fact now with the lockdown I should be working from home but with this level of noise I'm not sure I can continue. I'm very worried for the future of my children.

 

I am too. It's been very loud in the house with all us home. My tinnitus seems even louder these days. Do you have a spouse to help you? Last night I had to take another benzo for sleep. Habituation is so out of reach. None of my family have any idea the severity of my head noise... I feel so lost.

 

What caused it to get extreme for you? How are you able to do any thing?

 

My spouse used to think it was all in my head and that I should just snap out of it. She has been resentful a long time that I would not snap out of it. She even talks about separation. It got slightly better recently, she is being more reasonable. I rarely if at all talk about it with her but she sees I'm sick and desperate clearly, even if I don't talk about it. You see, once the ENTs have done most of their tests (that are largely inadequate for tinnitus, as the science is not there) rather than saying "we don't know", a few of them say "here, see this psychiatrist/psychologist, it will help". So you get classified by your relatives as someone with mental health problems, which could be a consequence of tinnitus but have nothing or little to do with why you have tinnitus in the first place. Mine came with an ear infection. But as soon as I was told to see a psychologist my wife thought it was a mental health problem. Mental health problems can be really horrible but with debilitating intrusive tinnitus we need help with the symptom first. Benzos seem to help some people and ruin others, but long term they are quite a gamble for everyone as if one hits tolerance it's hell. Shulman et al advocate Clonazepam plus gabapentin, a combo of antiseizure drugs, a benzo and a gabapentinoid. I'm trying to come off benzos after coming off pregabalin, the ugly sister of gabapentin, but as I drop the tinnitus gets even worse and I don't know if I will have the strength to keep my life together. My poor children need a functioning father. This bloody condition has destroyed me. Once one is completely off it may take at least 3-6 months to feel better IF it was the drug, but sometimes it can take up to two years or longer. We have valiant people in this forum who tapered off benzos and are fighting to go back to a less insane tinnitus. I know one lady whose tinnitus disappeared one year after she went off pregabalin. Many improve from benzo-worsened tinnitus. So it's not always permanent damage, sometimes the brain heals.
However, if you have not been taking xanax continually for at least 4-6 weeks this might not apply to you. It's hard to understand whether our worsened tinnitus is due to drugs or other factors. For example my kept worsening while I was on pregabalin, but it's not clear it's the drug. My virus could still be there and doing damage. No doctor has tested this, they just do nothing. It's so frustrating. You are left to try a torturing taper for months and months hoping it's the drug, but if you are wrong you will end up worse than ever, with unbearable tinnitus and no drug to dampen it. But we have no choice, we need to know.

 

The reality is that no one will come to save us. No one can help us. No one is going to help us. Nothing is going to save us. We are completely trapped. We can only accept this suffering, who is going to do that? Who wants to do that? Who wants to accept tinnitus destroyed their life? Who can? Who wants to accept tinnitus is gonna be there for the rest of their existence? In the brain. Torturing. Who can bear a life of hell and suffering? I have provoked myself a stomach ulcer few weeks ago, obviously I was not going to get anything, the whole thing was useless, I just go off for a few hours. I just wanna stop fighting. Stop suffering. It's enough. It's time to left this inhuman existence.

My existence is regrettable. I am too, all of this is totally regrettable, and stupid. The universe is absurd. Nothing makes any sense.

I am very sorry for all of us here. I'm really sorry. The place where we all find ourselves cannot be other than the closest thing to hell that exists on this planet. No one deserves this. No one.

I just wanna die in peace.

 

My wife is supportive but wearing thin because the amount of distress I've caused with my own suffering. I have taken .5 Xanax for about a month and was free for a couple days but unable to sleep at all. Now I'm back on it. My Dr think it's mental as they prescribed Lexapro to help me cope with the anxiety and depression. I'm no longer battling those issues though, it now is the reality of my situation. My tinnitus is noise induced and I didn't protect myself. I have no idea if Xanax had worsened it because it's been really bad since the beginning of March. I know my family is scared. I've told my wife to leave me and take the kids so they are sheltered from my future (however bad it goes) but she refused. I don't want them to hurt but I'm hurting so much. It really is unfathomable that a person should ever be in this situation. I feel @Chinmoku it's an impossible situation. I don't know how you keep it to yourself. It must be difficult. I break down every single day in regret and despair. I am so sorry this happened to you. I hope you find relief by eliminating the meds. I unfortunately doubt mine would improve that way since it came on prior. I just don't want to lose their effectiveness since that would leave me without any sleep aid. I just can't believe this had happened.

 

No one deserves this. Ever. I am so sorry for you. The issue is there is no way for anyone to help us. It's incurable which means your only option is up accept, cope, and adapt your life. All seem so impossible and unrewarding. I spend so much time on here it's depressing. Looking for hope. I discovered there is none unless your a first timer with low tinnitus. After that it just worsens. I can't imagine the next level when I can't make it at this level.

 

It's tough as hell for spouses as well. I think we should be way more upset with the "experts" publishing pseudoscience -- and the narcissistic ENT's who look at a basic hearing test and think they know your ears.

From a family member's perspective, they are not in your body and all of the "experts" are insisting that you need to treat the mental health. Just look at this.


Why does this show up like that? That paragraph should be in a hidden corner of the internet with a few people having anecdotal success that they have failed to differentiate from the correlations of time and standard care. How can we be upset with our families when this is propagated everywhere as the golden standard?

My family has been fully supportive, but even they've sometimes struggled with kind of thing. I know if I was in their shoes, I would as well. How can you not?

Scientific authorities are not supposed to lie. Period. Jastreboff is a fraud. I'm a mathematician. You don't think I could come up with a mathematical model for this? The difference is that I wouldn't advertise it as the f*cking cure. This is so embarrassing to the scientific community.

Our families should be listening to doctors. The problem is they shouldn't be lying. Short of our family members being abusive monsters, it's important that we don't let frauds rip our families apart.

 

I have it like you, high pitch, both ears, multiple sounds. How did you find it possible to habituate?

 

I don't really keep it to myself, my wife sees I'm struggling to survive, and my children sense that too. I also thought that if my wife leaves with the children or I leave it could be easier for them but they need my financial support and I fear that left on my own I would end it. I can barely stand it now, if I start living alone the temptation to end it will become very strong, it is already overwhelming. I don't know why we are suffering like this, @Capstan , this kind of suffering should be forbidden by cosmic laws.

 

I don't know, I went to doctors who could definitely have taken some action. I have a positive blood test, what shall we do about it? Shall we explore the viral route more? Shall we check the hydrops with a few more tests? Instead they do audiogram after audiogram, and then they send you to a psychologist. This is incompetence. They are not just lying, they don't care. If you go NHS they do the minimum indispensable and then they give up on you. If you go private they run a few more tests and then they send you to a psychologist anyway. You are left to fend for yourself, no doctor really takes your medical situation in their hands.

 

It really should be forbidden. You are a strong man to push through to support your wife and kids. I really admire it. I know the temptation, as it's already overwhelming, just don't want to slip while they still need me. If I could see them moved on and doing well, it would free me. It's a distorted thought but I really want them to have better than I'm giving them today.

 

My same identical feelings. Our only hope is the arrival or regenerative medicine and bimodal neuromodulation (but better than Len ire) but they are so far away, and this bloody virus has slowed down everything. Who knows when this stuff will be available and how effective it will be. I can't go on like this for years, not even months.

 

I am not sure it's only about legacy but small escalations toward it and normalizing in an effort to desensitize and build a resolve. I know suicide for me is still a scary thought but the more it's discussed the more it's normalized. I am also worried about the presence of bad actors in the thread to further normalize it. We all assume we're suffering the same but there may be some that do not. Be careful.

Question for the mods - is there a concern bad actors may exist in the suicide thread? @Markku @Hazel @Samir

Thoughts?

 

I can't hang my hat that it will fix my issues. I would like to see it, maybe we're on the cusp. Who knows?! Tinnitus and hyperacusis have some many differences and complexities between people, it might not work for even some of us. I hope I'm wrong.

 

@Chinmoku, @acute, @Capstan, @PeteJ, @HootOwl, @dan, @Harley, all you all here who I am a shit for not writing... cut me slack please, seriously.

I don’t have any inspiring words... I can’t do a fishbone on yah and string together some uplifting and poetic words... I ain’t got shit, I am tapped out.

We lost Allan, and I don’t want to lose you or me... I know that.
I understand your desire to be released from this hell and have no issues with that. I understand.
I understand you guys and I love you. Just wanted you to know...

 

Hey pink,

I’m sorry you have that same awful 1500Hz pure tone. It really wears on you, believe me I know... hang in there. I’m clawing through every day but it’s getting harder and harder...

 

I believe there is a lot of hope in regenerative medicine and honestly if it wasn’t for that I probably still wouldn’t be here.

 

I know Daniel, my friend, thank you for this. I'm crying. I am hearing my children playing in the next room and I'm crying. I just don't know how to go on. I cannot leave them but this is unbearable.

 

I think so too. That is literally the best part of this forum. @FGG is a real asset to that thread. She is amazing and provides a lot of hope.

 

With FX-322, they saw ear cells regenerating in the cochlea taken from a cancer patient, and they saw synapses attaching to the ear cells. This should take care of tinnitus due to hidden hearing loss and ear cells/synapses damage. In larger doses it should also repair low frequencies. It's a question whether the tinnitus will improve or not but we can be positive about it.
If the problem is the synapses, there is a synapthopaty drug OTO-413 in trials, but we don't know if it works. We only have hints for FX-322 that it works.

We also have neuromodulation, hopefully Susan Shore's device comes out soon and gives us a little relief. Although it's not clear to me how it can help someone like me who has been having constant worsening almost weekly. Maybe it will stop this trend or even revert it, who knows.

You say you have been on Xanax for a number of weeks. Do you notice a rebound effect when you stop taking Xanax, and between doses? If it worsened in a measurable way since you started the drug it might be slightly worsening it. Yet we need to sleep, I agree. When I tapered off Clonazepam quickly after 3 weeks I couldn't sleep and the tinnitus went mad. I am now tapering slowly but it's still very very challenging. Sleep is our only break and if we lose sleep probably we will be in a critical situation. Not that i sleep well, but at least I sleep a few agitated hours per night.

What could we take? I have tried melatonin, it works a little but not too well, lavender pills, that are natural calcium channel blockers, I tried tryptophan, I tried valerian but we should be careful with that while on benzos since it is a gaba agonist. I think anti-histamines work for me but after a while you get addicted to those too and their effect on tinnitus is uncertain. Some people take amitryptiline but again effect on tinnitus is uncertain. Others try quetiapine, although at a low dose that is mostly a anti-histamine and anticholinergic drug. We do have some options but it's not clear what to try. Benzos and Z-drugs can give dependence rather quickly so we should try not to stay on them too long, although there are people who are stable on benzos and got a good quality of life on them.

 

Tinnitus can be... pretty evil. I’ve been a member here for a few years and had my ups and downs with it but never really come to terms with it.

 

We all need to find what gives us that hope. I've read a lot of your posts and feel we have some similar symptoms. Besides FX-322 - how do you cope with all that is going on in your ears day by day? I stay in my bed and it's not a good approach. I feel the sheets are sometimes too loud or cause my tinnitus to react.

 

Today is a rough day. I've been avoiding this thread for the most part but I need to just vent. I'm so incredibly tired. I'm tired of my miserable life. Things have hardly been good for me in the 23 years I've been alive. I know they could be much worse, but it's... constant suffering, followed by some hope brought down by MORE suffering. It's endless. Every time things look up, life throws something else at me and I just wonder how much more I actually have to take? What else is in store for me if such short life has already made me suicidal for over 1/3 of it? What else is going to happen should my tinnitus go away? (which it won't, let's be real)

I don't want to suffer anymore. I want to live but I'm tired of suffering. But I don't want to hurt my mother and brother. I don't want to hurt my best friend. I'm just tired. So tired.

 

To Chinmoku:
I have had the same baffling, infuriating experiences with ENT doctors regarding their total lack of interest in my recollection of all or any of the various aspects and idiosyncrasies of my particular tinnitus. They have acted like automatons who state that "absolutely nothing can be done about this" as soon as they enter the examination room.

It's as if this is such a self-evident fact that such a description of my symptoms is pointless.
I wanted to ask:

1) Do I have a lingering viral particle that is in remission and then active? Could this explain the wild fluctuations of sound volume I experience? Could some sort of "flushing out" of the eustachian canal be worth trying?

2) Do I have some sort of residual, intermittent inflammation that could be reduced by anti-inflammatory drugs?

3) Would any of the nerve pain drugs be beneficial?

4) Should I see a TMJ specialist? Is some part of my jaw misaligned and pressed too closely to the inner ear?

I have seen three ENT doctors, and never had even the slightest opportunity to make any of these suggestions.
None in fact had ever even heard of any of these electrical bimodulation experimental methods. Their intransient ignorance and disinterest in the whole realm of tinnitus etiology is astounding. Also, their inability or pointed refusal to realize that such a bluntly uncaring attitude may be psychologically devastating (to the point where patients are led to dangerous suicidal ideation) verges on moral imbecility.