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Suicidal

So ZugZug, you got diagnosed with something I see? How long did it take to get diagnosed with Sjogren's Syndrome?
 
Had another mental breakdown yesterday. It will be my last no doubt about it. Because of surviving like this for so long, I seem to forget what was it like leading a normal life instead of dealing with these issues all day. I haven't been a part of society for almost a year, at this stage it feels like I'm living in an alternate reality, thinking about how my life deteriorated so fast... unfathomable.

It's like the universe or life itself are having a big laugh at me, but I will have the last laugh. Can't endure any of this anymore, it's just not worth it. Maybe if I had had a good 40, 50, 60 years I would accept enduring this, but 20 good years and then hell from then on with no relief and no possibility of ever living like a normal person? No thanks.
 
I'm not adverse to trying anything, it's just that next week I might get all the answers I need before I make the final decision. I will be evaluated by a top Audiologist in my country which has clinical research experience in auditory processing in normal and impaired hearing systems, so I might get some answers as to why I'm so hard of hearing with 'normal' audiogram and ABR (it was sudden, that's why it baffles me the most). The jaw surgery might help but no way of knowing until I'm under the knife.
Hey, I have a question. You say your audiogram is normal yet you're hard of hearing? I have a problem that's similar. I am actually hard of hearing and have been my whole life, but lately feel like I hear worse ever since an ear infection, but the hearing tests don't show any objective loss in my audiogram.

Can you elaborate on your case? Thank you and feel better.
 
Had another mental breakdown yesterday. It will be my last no doubt about it. Because of surviving like this for so long, I seem to forget what was it like leading a normal life instead of dealing with these issues all day. I haven't been a part of society for almost a year, at this stage it feels like I'm living in an alternate reality, thinking about how my life deteriorated so fast... unfathomable.

It's like the universe or life itself are having a big laugh at me, but I will have the last laugh. Can't endure any of this anymore, it's just not worth it. Maybe if I had had a good 40, 50, 60 years I would accept enduring this, but 20 good years and then hell from then on with no relief and no possibility of ever living like a normal person? No thanks.
I am so sorry you are going through this, and you are so young. Hang in there -- a treatment is on the horizon. In the meantime, do what you can to stay in the game. I always have Xanax for when I have meltdowns and feel suicidal or can't handle one more damn thing going wrong and just need to shut down.

For what it's worth, I'm in my 40s and had depression in my 20s and 30s where I was suicidal and had to take meds. When I got hyperacusis and tinnitus last year I thought it was going to ruin me, but then my father died and my mother was hospitalized, and it shifted the importance tinnitus had in my life, and my hyperacusis and tinnitus actually improved even when I was an emotional wreck about my parents. So things do have a twisted way of getting better. It's not always linear. I really hope you can stay with us here. We care. Big hugs.
 
My neuropathic pain became unbearable. That's the last thing I needed. I'm waiting for Pegasos' answer regarding if refund is possible if I'm rejected. If possible, I'm applying as soon as I get the confirmation. There is so much that I can take, at least I will know it will be temporary, I've suffered the equivalent of an entire lifetime. Don't get me wrong, the severe tinnitus and hearing problems are the most debilitating, now coupled with chronic neuropathic pain, I just don't care and won't try anything anymore.

I've reached my boiling point finally. I hope the request doesn't take a while to process. I'd like this nightmare to end ASAP. In the meantime I will make sure I have every document needed so I'm guaranteed the VAD.
 
My neuropathic pain became unbearable. That's the last thing I needed. I'm waiting for Pegasos' answer regarding if refund is possible if I'm rejected. If possible, I'm applying as soon as I get the confirmation. There is so much that I can take, at least I will know it will be temporary, I've suffered the equivalent of an entire lifetime. Don't get me wrong, the severe tinnitus and hearing problems are the most debilitating, now coupled with chronic neuropathic pain, I just don't care and won't try anything anymore.

I've reached my boiling point finally. I hope the request doesn't take a while to process. I'd like this nightmare to end ASAP. In the meantime I will make sure I have every document needed so I'm guaranteed the VAD.
I don't mean to criticize or anything like that but I have a truly honest question. You (maybe some others as well can answer this) are at your end stage. You don't want to go any further. My guess is you don't want to die but you don't want to live, like this. I completely understand your position and I want nothing more than to be there for my family but this has hit me like a brick wall and it's painful to wake up everyday. If I was truly at my last straw, I would try anything possible, knowing that whatever the outcome is, it's only temporary if your symptoms don't improve. Legal, illegal, dangerous, I don't care, I would try any promising treatment.

I know that it's easier said than done and it seems also like your financial means might not accommodate some of the applicable treatments so I'm not being at all judgmental. I guess I'm literally just asking: have you tried everything possible? And if not, why not? Have you tried Ketamine, Ebselen, Trobalt, Psilocybin, etc? I would inject that shit right in my ear if there was a chance of recovery BUT only if knowing my mind is made up that it is my last straw. What's the worst that can happen? Your symptoms get worse? You die? I guess at that point who cares, knowing you have a plan B. At least you know you really tried and if nothing else, advanced research for others in a similar position, if you care to help others that are suffering.

Good luck with whatever decision you make. It really is unfair that these things happen to young people. I hope you find what you're looking for but only after you've tried every option available to you.
 
My neuropathic pain became unbearable. That's the last thing I needed. I'm waiting for Pegasos' answer regarding if refund is possible if I'm rejected. If possible, I'm applying as soon as I get the confirmation. There is so much that I can take, at least I will know it will be temporary, I've suffered the equivalent of an entire lifetime. Don't get me wrong, the severe tinnitus and hearing problems are the most debilitating, now coupled with chronic neuropathic pain, I just don't care and won't try anything anymore.

I've reached my boiling point finally. I hope the request doesn't take a while to process. I'd like this nightmare to end ASAP. In the meantime I will make sure I have every document needed so I'm guaranteed the VAD.
Hi Roy,

I don't know too much about your situation, but I just wanted to let you know that I also developed very extreme neuropathic pain in my arms and legs a couple of years ago, during a particularly stressful time. I was tested by a neurologist and told there was nothing physically wrong with me that they could fix, so they put me on some Amitriptyline and hoped for the best.

My nerve pain went away after a couple of months. I don't know if it was the Amitriptyline, becoming less stressed, or for no reason at all, but it went away.

When we are under severe stress, our bodies often display all kinds of weird symptoms - I feel like I've had everything! But it absolutely does not mean you will have these symptoms permanently.
 
I don't mean to criticize or anything like that but I have a truly honest question. You (maybe some others as well can answer this) are at your end stage. You don't want to go any further. My guess is you don't want to die but you don't want to live, like this. I completely understand your position and I want nothing more than to be there for my family but this has hit me like a brick wall and it's painful to wake up everyday. If I was truly at my last straw, I would try anything possible, knowing that whatever the outcome is, it's only temporary if your symptoms don't improve. Legal, illegal, dangerous, I don't care, I would try any promising treatment.
You're correct, however that's much easier said than done when you're severely depressed. When you reach the point of depression that makes you consider suicide, you don't tend to have the energy/motivation/ability to try anything else. It's not that you don't want to - you just can't. That's why it's often essential to treat the depression alongside the physical symptoms, as the two are so intrinsically linked.
 
Not all suicidal people are depressed. That was a furphy I used to believe. I am not depressed, but I am very suicidal. I am tortured, and suffering from noise abuse. I want to yield to it. I'm done. It's not that I want to die, I don't. I want to live without the noise. Doctors tell me I am depressed. Nope. Make this noise go away and I'll be fine.
 
So ZugZug, you got diagnosed with something I see? How long did it take to get diagnosed with Sjogren's Syndrome?
I'll be fair about the whole thing. It took 7 years, but some of it was "my fault." I put that in quotes because what happened is somewhat early on, maybe 9 months in, a rheumatologist did suggest the biopsy. However, the biopsy is something that's no sweat for someone skilled, but not that desirable from someone bad. However, around 2017, I did see a good doctor and simply didn't do it. My reasoning was that I wasn't going to go on medication anyways, so what's the point of cutting my lip and taking any risk at all?

In hindsight, this was a mistake. I did have many, many doubters, but I'm not going to pretend like it took 7 years for someone to get the idea of Sjogren's. It was an unfortunate situation. Of course, duh, if I would have known that I would get a condition so disabling that I couldn't even tolerate car rides, I would have easily gotten it sooner. There's a lot of taking the outcome and working backwards.
 
Not all suicidal people are depressed. That was a furphy I used to believe. I am not depressed, but I am very suicidal. I am tortured, and suffering from noise abuse. I want to yield to it. I'm done. It's not that I want to die, I don't. I want to live without the noise. Doctors tell me I am depressed. Nope. Make this noise go away and I'll be fine.
I know what you mean because I wanted to live without the noise in my brain too but I think I'd be much happier without reactive unmaskable intrusive tinnitus and would gladly just take mild maskable tinnitus lol because I used to have mild tinnitus but it was like I didn't have it because I hardly ever heard it during the day.

It's still possible that your tinnitus could at least lower to the point where it can be masked more because it's gotten quieter but it takes time. I know how horrible severe tinnitus is.
 
I know what you mean because I wanted to live without the noise in my brain too but I think I'd be much happier without reactive unmaskable intrusive tinnitus and would gladly just take mild maskable tinnitus lol because I used to have mild tinnitus but it was like I didn't have it because I hardly ever heard it during the day.

It's still possible that your tinnitus could at least lower to the point where it can be masked more because it's gotten quieter but it takes time. I know how horrible severe tinnitus is.
Thank you. My tinnitus hasn't got quieter. It is so so much worse now than it was in the beginning. When did your severe tinnitus start to get better? Did it get worse before it got better?

I would happily accept mild or even moderate tinnitus as well. I read posts of people online and it is depressing to realise that my "good" days are worse than *most* people's bad days.

I'm just done. I need peace.
 
Not all suicidal people are depressed. That was a furphy I used to believe. I am not depressed, but I am very suicidal. I am tortured, and suffering from noise abuse. I want to yield to it. I'm done. It's not that I want to die, I don't. I want to live without the noise. Doctors tell me I am depressed. Nope. Make this noise go away and I'll be fine.
Hey Alias, have you ever tried LDN? Given the unknown cause of your tinnitus I think it would be a good idea.
 
I have sat with my parents and explained to them about my decision to apply for VAD in Pegasos. The idea is not new to them as I have also been suicidal for almost a year when my symptoms became unbearable and debilitating (as you can see I'm still here so nothing changed for the better - only for worse).

Still, it was hard seeing my mom crying. I tried to explain to her that's if I can't live like a normal human being, then at least my suffering will come to an end, and also that I won't be a burden on them and they could enjoy their life as they are nearing retirement.

I really rather die like a human being than off myself from a high building. I can't seem to go through with doing it so that's another reason.

Waiting for Pegasos' response for a couple of questions so I can finally kickstart the process. It's comforting knowing that this nightmare will have an end, albeit not the end I wanted or aspired for. Nothing of the things that happened to me makes sense considering the severity of everything, but I guess one needs some good fortune in life.
 
Hey Alias, have you ever tried LDN? Given the unknown cause of your tinnitus I think it would be a good idea.
I have a script for it, but the overwhelming majority of people say it worsened their tinnitus, so I decided not to get it compounded. I wouldn't survive a worsening.
 
I have a script for it, but the overwhelming majority of people say it worsened their tinnitus, so I decided not to get it compounded. I wouldn't survive a worsening.
Wow. I have seen the opposite. For @Samantha R, I believe it was life changing. Of course you have to do what is comfortable for you.
 
Roy, did you consider a cochlear implant or treatment with Zoledronate? According to this study it could help:

Bone disease medications may reverse hearing loss
Regeneration of Cochlear Synapses by Systemic Administration of a Bisphosphonate

Naturally, dosing regimen for some effect in humans is unknown. During cancer treatment, they give 4 mg every 3 weeks. In treatment of Pagets disease they give only 5 mg once per year. One MD used it and other Biphosphonates as well. He reported some good results in tinnitus:

Use of bisphosphonates for otosclerosis

Of course, I don´t know how credible it is.

Possible side effects:

Zometa and Tinnitus - a phase IV clinical study of FDA data

I would try anything before making a final decision.
 
Turns out without full consent of my parents to the VAD Pegasos won't approve it. I think I'll have to do it myself I guess. At least before I'm out the science of Audiology should research my rare hearing problems. I truly feel like I'm the only one who has these dumbfounding hearing problems, if tomorrow even a professor of Audiology can't explain to me what the hell is going on with my hearing I'm offing myself on the spot it seems.
 
Turns out without full consent of my parents to the VAD Pegasos won't approve it. I think I'll have to do it myself I guess. At least before I'm out the science of Audiology should research my rare hearing problems. I truly feel like I'm the only one who has these dumbfounding hearing problems, if tomorrow even a professor of Audiology can't explain to me what the hell is going on with my hearing I'm offing myself on the spot it seems.
Why do you need your parents' consent? Is it 21 that you don't need it? If so, just hang on.
 
Why do you need your parents' consent? Is it 21 that you don't need it? If so, just hang on.
This is what the guy from Pegasos said. It will just be a waste of €1500 if my parents won't consent to it as my age plays a role. Stupid but whatever.

I don't know if it is worth to even get into it as I'm unbearably suffering every day. There is no break from any of this, never was.
 
This is what the guy from Pegasos said. It will just be a waste of €1500 if my parents won't consent to it as my age plays a role. Stupid but whatever.

I don't know if it is worth to even get into it as I'm unbearably suffering every day. There is no break from any of this, never was.
Ever thought of attempting mixing your tinnitus as a sound file for others? Might hear similarities and perhaps make connections to some of the wilder sounds.
 
I have a script for it, but the overwhelming majority of people say it worsened their tinnitus, so I decided not to get it compounded. I wouldn't survive a worsening.
Hey, @AliasM. I recall you pondering about LDN because of autoimmune issues. I am starting LDN for diagnosed Sjogren's Syndrome, while I'm waiting to start other meds. My cause of tinnitus is unusual, but I will let you know (hopefully I remember) what it does for me.
 
I am starting LDN for diagnosed Sjogren's Syndrome, while I'm waiting to start other meds. My cause of tinnitus is unusual, but I will let you know (hopefully I remember) what it does for me.
Good luck and let us know if it works. I am looking at it myself but haven't been able to get a script yet.
 
Pegasos is out of the question. Without my parents' cooperation it will be a waste of money, stupid for Pegasos to demand it as I'm an adult, but whatever.

A high building should suffice but I can't seem to bring myself to one. I have made up my mind, I just can't live with the severe tinnitus and hearing issues. Also, I'm too young to have the same hearing issues of someone with severe hearing loss while I have a normal audiogram and EHF thresholds and ABR. I guess it's all synaptopathy which is weird as it wasn't even gradual.

Also these physical issues, they don't even make sense — adding to my already unbearable suffering. Another year with me not understanding human speech and I will get Alzheimer's disease anyway.

I'm just torturing myself by not offing myself... can't do nothing with my life anyway. I sometimes kind of feel for myself for having to throw a life away when a bright future was ahead of me, and because of what?!? Working in a cafe?!? How can your brain suddenly cease processing speech with no substantial hearing loss/noise exposure?

But I made peace with my reality months ago.

At this point i sound like a broken record.. i guess it will continue to be like this until i finally have the courage to be done with this life, as things won't get better.. they haven't for over a year. Hearing and ear issues can really be enigmatic in some cases.
 
I do not encourage anyone to commit suicide, but it is clear that we all have a limit to how much torture we can endure. I would never use Pegasos or the like, too much stress involved (for me at least), unless you live nearby, but the method they use is without a doubt the most optimal and it is possible to do yourself. Again, I do not encourage anyone to commit suicide.
 

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