Suicidal

@shelbynn, but what if it does get better and your brain does learn to adapt and the way tinnitus makes you feel does change? Because that is what lies ahead. Are you not curious to know what that feels like?

 

I’m pretty much the same age as you and I struggle with these sort of thoughts daily so I won’t push any positivity on you but I just wanted to say that, we are awfully close to potential treatment.

SPI-1005, the Meniere’s drug that showed significant improvement in tinnitus is in Phase 3 right no. FX-322 is doing well and we will potentially be seeing what it does for tinnitus in just a couple of months. OTO-413 also just released studies in December that basically showed it works and is more than just placebo.

At least give yourself a few months to a year to see where all of these go.

 

@cruise, I'm not gambler. And I can't bet on it possibly or maybe getting better. Can it actually get better? Because right now I'm going backwards. I'm back to getting ear pain, ear fullness, tinnitus back in my left ear, it the noise is rising. It doesn't seem like it's getting better to me.

I read your success story and I'm really, really happy that tinnitus does not rule your life anymore. I really am.

I don't believe that's for me. I've suffered enough in my life. And now I'm experiencing torture 24/7. I don't need to go through this anymore for something that's not going to get any better.

 

I would say the lucky thing about getting tinnitus now is that there are at least promising treatments that are coming.

I tried to sign up for Susan Shore's trial but I didn't have tinnitus long enough for them to be able to accept me but encouraged me to reach out in 6 months if I still have it. I don't know how I'll make it another six months.

 

@shelbynn, I have read your other posts. It sounds like you are in the middle of a setback. For me, the first setback was at about 3 months and I experienced it as the worst part of all. I lost hope because just when I thought I was improving, I was thrown back to square one. Like you, I thought that I would get stuck forever in that phase, back and forth between square one and square two so to speak. I can relate very well. I remember thinking that I don’t wish a tinnitus setback to my worst enemy. Long story short, I got past it and saw that after the setback I improved a bit compared to before the setback. That is when I really realized that the recovery is two steps forward, one step back. Once I realized this, the next setbacks did not have the same impact. They kept loosing power until they reached a level of being a little annoying at the most.

 

@cruise, healing isn't linear and that's definitely true. I have a new buzzing tone in my left ear that was silent. Will this go away or is this now a new permanent noise in the cacophony of agony I'm dealing with?

 

@shelbynn, I also experienced new tones in the first months. And that was indeed scary. But as my brain adapted and started paying less attention to the sounds, all sounds sort of blended into one as they started retreating to the background.

 

I needed to hear this, thank you!

 

It would be a shame to give up now. Each day is difficult but I just keep telling myself how much would that suck if we gave up now and they release something helpful in a year or even sooner.

Hang in there!

 

I've recently gone through some events (completely unrelated to tinnitus and hyperacusis) that reignited severe, and I mean severe PTSD that I had repressed for many years. Fucking really wishing I could just slip away and die, no future for me besides being extremely erratic and unstable.

It's like tinnitus and hyperacusis destroyed all progress I made overcoming everything else in life I worked years on.

 

I read that and I have it myself.

I relate 100% with you GBB.

My tinnitus is fluctuating a lot. I do have static tones, but most of it is comprised of alternating tones that are difficult to describe.

I was doing better managing it. I've been struggling more with my hyperacusis since April. However, 5 days ago, due to that accidental slap, my tinnitus has worsened again and I'm again consumed by it, just like you say.

Unfortunately the qualitative profile of my symptoms, does make me believe that it is a brain thing for me too. Like you I am kind of skeptical whether inner ear regeneration might be of any help. But even if it supposedly is of any benefit, marketing of those kind of protocols still seem far away, thus valuable years of our lives will be already wasted. Living with this situation is hard to describe and to communicate. I also don't share any more with my family, nor with friends. Like you, I mostly keep it to myself which intensifies the desperation that comes in waves, along with deep unwellness, panicking intensity and deep rooted sadness and a sense of helplessness.

I wish my tinnitus had remained like it was during its first onset. It wouldn't be an issue by now. I never understood why my situation got so much worse, in spite of making huge compromises and lifestyle changes.

I'm really sorry for myself and I'm really sorry for other people who goes through this, like you do.

 

I was thinking about you Valeri.

I see you try to stay updated with the research too.

Hope you are holding up.

 

Hyperacusis seems to have a mind of its own as well as tinnitus. At least for me it seems to keep getting worse. From the moment of its onset it has been a huge game changer. I can't figure out anymore if the complications of my tinnitus is due to hyperacusis which - likewise tinnitus - might consist of many sub-forms. Some of them get better, some of them get worse. We all speak out of our personal experience. But the suffering of the people who relate to each other in this thread, is a common ground.

I read your situation @Chinmoku, it breaks my heart. While I was sharing the same thoughts above with @GBB, and like I once asked in the past @dan, can this be tinnitus? You know, like it is defined in its classic audiological context. Because you get to read and hear the majority of the people, whose tinnitus (gladly) remains a minor annoyance. A slight ringing that they end up hearing only during bedtime. And then there are people like us here. Progression after progression. With no way to identify the underline cause. Noise?

When I reflect on my symptoms I can't believe that noise can just have created such a mess. For me I believe that is a form of brain injury, maybe by drug toxicity and thus things got damaged deeper. Realizing that, I see this is bad news. Once the brain is damaged... that's big big trouble.

I do frequently feel suicidal. Then I feel numb, then again suicidal and so on. How did we end up on that roller coaster of horror? I've lost track.

Big big big hug @Chinmoku.
I can't even imagine what you are going through, while having to raise children when dealing with such a horrific condition.

 

I'm at a low point again. Because... It keeps getting worse. I can't emphasise this enough. Doesn't matter how much I protect, how much I try to slow down the worsenings and give myself quiet time. It's all useless. And it's not even loud sounds that make me worse. Probably in the 75-80dB mark for a few minutes / week. I am protecting and taking NAC, N-Acetyl Carnitine, Magnesium, vitamin C, and some multivitamin. I introduced some mushroom based supplements but I don't see any difference yet. I'm doing anything I can and tinnitus keeps f**king me over. I just had a visual migraine and a headache... I don't really see the way out of this mess...

 

You will come out stronger after the tinnitus challenge. I did.

 

I seriously cannot go on another 24 hours and I really earnestly mean this. Severe dysacusis, my dysfunctional family, PTSD, everything else catching up with me. It puts me to sleep knowing I could just pull the trigger and game over. My anxiety and depression and sleep deprivation are so severe that even insane amounts of medication do literally nothing. Same applies to my hyperacusis. no amount of therapy, grief counseling, cbt, psychobabble etc has even the most minuscule effect on me. I've withdrawn from all friends and family because being around seemingly "healthy" people just depresses me. nothing helps me at all. im just dead

 

Thank you!

This year marks a decade of hell. Silly me for thinking I have it bad, no... it got worse. The new high pitched whistle I developed 14 months ago not only is permanent but it’s getting progressively worse and I don’t know why.

As if constant engine in my head wasn’t enough already

 

Yes I am progressively worsening, it could be due to all sorts of things, meds, noise, stress, head trauma, anything that affects the brain, because it's a brain thing and the brain latches on to every hearing loss, that's why new tones keep popping up. It's brain damage, but in the auditory pathways.

 

Believe me Valeri...
I understand.
I wish we could figure out the reason for all these random worsenings.

I thought I had it bad too but this is a completely different thing. What is even more terrifying, is another future worsening (which I don't have any reasons to believe that there won't be) that will render my current state as another "I thought I had it bad" situation. And I do have it very bad already. Seems as if it's endless or something, doesn't it?

 

Do you also have hyperacusis?

For me, hyperacusis kicked in April and one month ago it got much worse. Tolerance has dropped and I am not sure how to handle it. My tinnitus is pretty bad as you know, but it seems that I accept much quicker the new tones, possibly because I perceive already numerous ones. However I can't deal with the sensitivity. It's impossible and at times physically painful. Sigh...

What meds are you on?

 

I think I am soon departing from life.

 

Coming up on 4 years.
I thought I did it.
I stopped reading the forums. I stopped looking for answers. I reached for habituation and delicately held it in my hands.

The final nail in the coffin is learning that the hope you felt was possible was just an illusion.

6 more months to get affairs in order. To pay off debts to leave no burdens to my family and loved ones.
It's nice knowing there is a final place where you can do your best to ease the transition for those in your life.

It almost gives you a little of that hope back.
The real challenge will be making it to there.

I'll try.
My very best.

 

This cannot continue.

 

Are you planning to go to Switzerland?

 

Is all this really true? Realistically how long before any of this is on the market?

 

Check the Research News threads for more information. I haven't kept up with SPI-1005 much but people estimate FX-322 will be out in the next three or so years.

 

Yes it’s all true, I pulled all the information from their trials!

Since the SPI-1005 one was fast tracked by the FDA for COVID-19 related reasons it might be the first available. FX-322 previously stated that they will release 90 day readout results sometime around the end of Q1/2021 which would be March. They had anecdotal reports of tinnitus improvement in the previous phase so they added it as something they’re watching in this current trial which is awesome news.

There aren’t really other dates available at the moment and it’s hard to say. I personally err on the side of caution with these things. For FX-322 particularly a lot depends on the current trial and whether or not they get fast tracked by the FDA as well.

I’ve also seen that Susan Shore opened her trials again and the clinical trials page lists that the estimated study completion date is May 2022 (which does sound far off now) but in the grand scheme of things I think it’s very positive and we might have some sort of drug available to us before then too.

Perhaps Lenire will make updates to their device before then as well.

Overall, I think things are looking good. Hoping the ATA also puts that new $2.7M donation to good use and actually funds some research as well.

 

The thought of suicide is the only thing that comforts me. I cannot continue living like this.

 

I wouldn't put much faith in the ATA. Bunch of hot air in my opinion. I'm sure they will fund some stupid study with the money on coping mechanisms or something dumb.

They are absolute morons in my opinion.

I asked them very general questions when my hell started and they gave the most vague, worthless responses.

Better off donating to actual research.

 

Thank you, @vermillion. I also think of you often, I remember your past messages. I agree that talking about "noise" is reductive, mine seems more like a pain signal mixed with some electric signal, the pitch so high and loud as to escape the definition of ordinary noise. I don't know why this worsening continues, the only thing I can think of is my previous run on Pregabalin (I'm almost one year off now) and then benzos, but coming off benzos is impossible with the level of distress I have now, I tried and got to an impossible point even with a slow taper. But I also see people worsening who are not on benzos or medications, so it's not 100% sure it's the benzo. I don't know how I will survive this. I think that more ordinary tinnitus will be helped by FX-322, OTO-413 etc but I am not sure my case will be helped because it's so much beyond a "noise" that it would take a hell of a reverse plasticity to counter this torture. There is no way I can survive this for 2-5 years. I basically have no hope left except that my brain at some point has had enough and resets to a better state. It's a very weak hope, I know, but it's all I have left. I don't know how much longer it will keep me going. I hope we may all improve one way or another, this is so inhumane and at this particular junction we can't even get palliative help, everyone is focusing on the virus pandemic, even in psychiatric wards they tell me.

All I can try to do is to agonizingly hold on a little longer, how long I don't know.