Suicidal

Discussion in 'Support' started by jeremy06, Oct 14, 2018.

    1. AliasM
      Depressed

      AliasM Member

      Location:
      Australia
      Tinnitus Since:
      Dec 2020
      Cause of Tinnitus:
      ? Autoimmune, daily headaches, Ibuprofin, BP meds, Virus?
      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.
       
    2. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      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.
       
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    3. livewire77

      livewire77 Member Podcast Patron Benefactor

      Location:
      Czechia
      Tinnitus Since:
      12/2019
      Cause of Tinnitus:
      Loud music on headphones
      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.
       
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    4. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      My life: LOL
       
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    5. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Probably noise from working in a cafe' for 2 years
      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.
       
    6. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Why do you need your parents' consent? Is it 21 that you don't need it? If so, just hang on.
       
    7. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Probably noise from working in a cafe' for 2 years
      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.
       
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    8. Matchbox

      Matchbox Member

      Location:
      BC Canada
      Tinnitus Since:
      August 2020
      Cause of Tinnitus:
      Noise Induced, Prednisone (drones), Barotrauma (distortions)
      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.
       
    9. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      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.
       
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    10. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      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.
       
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    11. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
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    12. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Probably noise from working in a cafe' for 2 years
      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.
       
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    13. Lasse S

      Lasse S Member Benefactor

      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Acoustic trauma
      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.
       
    14. pleasejuststop
      Suicidal

      pleasejuststop Member

      Location:
      Ny
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Loud noise
      Do you know how much Pegasos costs? Probably a waste of time for me anyway.

      I think a high building will have to suffice for me. I'm too young for these physical disabilities. I can't handle it anymore. I don't want to. I'm terrified for the future. I just have to decide on a date.

      I'm so young. Only 21. I'm so tired of this. I'm so terrified all of the time. I can't sleep without powerful sleeping pills. The anxiety is unbearable. And tinnitus just worsens. It gets worse after social outings. Happened today, even though I hadn't been to a social outing in a while. I'm so tired.
       
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    15. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Probably noise from working in a cafe' for 2 years
      Hey man, I'm 21 as well.

      I have come to the decision that high building will be my choice. Forget about Pegasos, young guys like us need the parents' full cooperation for VAD and mine won't cooperate. Also, it's €10,000 which is quite a sum of money.

      I'm also having neuropathic pain in my arms and legs like that's what I need on top of severe tinnitus and hearing problems.

      Hang in there if you can, in my case I know I tried every available option but to no avail - stuck with severe tinnitus and severe hearing problems that have no explanation, add the physical issues and that's enough, especially when you have endured it for almost a year and EVERY day was the same. It's hard to imagine that once, not long ago, less than two years, I lived a completely normal and full life.
       
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    16. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      Hey, @roy1159, just clutching at straws here. I wonder if you have been worked up for autoimmune diseases.

      My story is like one in millions, but I was recently diagnosed with Sjogren's Syndrome. My first symptoms were neuropathic pain in my arms and legs. My diagnosis is assumed to be cranial neuropathy.

      We both have severe tinnitus, but I have loudness hyperacusis, while you have the speech problems. I wonder if it's possible that minor differences in auditory nerve dysfunction and/or brain response to it can account for some variance here.

      I'm not sold on the cafe thing, though it's possible. Also, I just started Wellbutrin today. It will probably worsen my hyperacusis, but I will let you know what I think.
       
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    17. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Welp I'm back here again - bad week culminating in bad day. When you have too many bad days in a row it seems very logical to ask what the point in persisting is. This is such a perversion of life.
       
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    18. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Because you have a lot of gifts that future you might be able to use to have a good life? And you are still acute enough to see a lot of decrease in severity even on its own.

      I can't say I know what the point of life is generally, though. I just hope it gets better for you and all the rest of us.

      Maybe don't use anything with beeps or sound therapy in any shape or form while you have touchy reactive symptoms though. Just my opinion. I know people disagree.
       
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    19. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Ya the Neosensory beeps were not great - seemed to kick off my reactivity again. The reality is I'm not going anywhere for now, but man, feeling like that's an outcome in contention, with a realistic shot at prevailing over the other happier outcomes, it just sucks. I was really hoping I'd be able to shower (with earplugs) on a consistent basis by 9 months. If not 9 months, I'm not sure it will ever happen, but at least I feel like I can add data to the community by continuing through this experience.

      On a side note, I feel like this site not systematically collating causes/durations/outcomes is a REALLY BIG missed opportunity. The state of tinnitus data is sooooooo poor. So many people here come looking for answers on their odds - can't we do a once yearly data compilation and answer some basic questions? Why not publish a community fact book once a year. We had intake of X many people for A/B/C putative causes - X many reported reduced symptoms - of those a/b/c medications/therapies were employed. Z many people left the site after a median duration of x posts and y days, and on exit Y many were unresponsive, though Z many indicated their condition was better/same/worse. Maybe there should just be a bot that prompts people once a year. The fact that so many things here are qualitative descriptions, it feels like we could be doing so much more as a community. This site could be THE DEFINITIVE empirical database of user experience.

      What supplements have you tried? Do you feel they made a difference? What therapies? What comorbid conditions do you have? The list goes on and on and on, and it could be totally anonymized...

      Imagine some sort of yearly fact pack based on the largest and most invested community with this condition probably in the world. This site could easily trump the medical community as a preeminent source of info with a well-crafted data gathering apparatus.

      To be clear this is not a criticism at all of the site - it is a FANTASTIC resource. I'm just thinking what levers can be pulled to make it even better.
       
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    20. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      I was never a person to experience anxiety before getting tinnitus and hyperacusis. In fact, just like tinnitus and hyperacusis, I didn’t really understand what anxiety meant. Obviously now I do.

      I think what frustrates me the most often about my condition is how much anxiety I have before doing anything. Everything I want to do now starts with the thoughts: “how can I do this without making my hearing worse” and “what can happen during X that might makes my hearing worse.”

      It’s really exhausting and frustrating to think about this all the time, for stupid shit like putting the trash out to something more legitimate like flying in a plane.
       
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    21. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      This 100% - everything from running the washing machine adjacent to my bedroom, to should I try to shower with earplugs or run a bath, to okay how long can I use my space heater to warm up my room before the fan noise spikes me. It's gotta be neuropathic - why don't these god damn nerves heal up, and how the hell did I obliterate them to smitherines but I can still hear most things fine? *Sigh*

      The longer this persists it makes me think maybe all of us have some viral cofactor - we didn't serve in Iraq with things exploding left and right - there must be a common weak link for normal stuff to get us to where we are.
       
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    22. serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      This is so accurate. Even though I am mostly out of pain and grateful for it, I am still susceptible to flare-ups which can trigger my symptoms. It's honestly so limiting and mentally exhausting. It really ruins your ability to be carefree - even simple things like going out for a walk become fraught with questions like 'will the neighbours be using power tools?' (the answer is always yes lmao).

      I feel like I have to painstakingly ration my noise exposure and tally up how much noise I get exposed to so I don't push my limits and risk a setback. The kind of thought processes I have would probably make me sound crazy and obsessive to a regular person but it's just normal life with hyperacusis. No wonder Liberman once said that many people with pain hyperacusis become 'recluses'.
       
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    23. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Would you consider stem cells in Asia? If you are at the point of death maybe it's not a bad consideration. I do have a list of things I refuse to off myself without trying first - some sort of stem cell therapy like SC21 in Thailand is on my list.

      The danger comes when you have a sudden day of even more intense severity among the already severe, and emotion overcomes reason, for me anyway.
       
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    24. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      We’ve literally been wanting to do this for years. But it’s not a simple endeavor. Of course, we already have conducted several large-scale surveys (n>5,000) and have shared that data with academia. But what is missing, as you point out, is the longitudinal data.

      There are a number of challenges:
      • This requires custom web and database development and therefore money — we are talking in the tens of thousands to do it well. As you might know, we operate on a shoestring budget.
      • We would need to think very carefully about what datapoints to collect and how to phrase the questions in such a way that it would yield scientifically valid outcomes. We’d also need to take into account GDPR legislation, and ethics committee approval if we ever want to publish the data. It would take a lot of back-and-forth between us and various experts to get the data points just right.
      • Close and diligent project management would be needed for all of the above, and we’re just a few volunteers who are already overloaded with projects – website overhaul, podcasts, videos, other content development (work in progress, not yet published) research collaboration, awareness raising. We are continuously trying to recruit new volunteers. I probably speak to several people per month who say they want to volunteer. But most of them either don’t have the right skills or start something and then disappear again.
      • We also need to think about how to continuously collect the data once we have a system up-and-running. One obvious challenge is that people tend to disappear once they get better and if we cannot capture their data then our outcomes might not be very meaningful. Intensive engagement might be needed, which requires dedicated resources (and again, we’re just a small group of volunteers).

      To be clear, I’m not saying it can’t be done. I’m not saying we don’t want to do it. I just mean to say these kinds of ideas are not new to us. We agree that this site, with its significant outreach, has awesome unmined data potential. We even applied for a grant last year, together with an academic partner, to accomplish exactly this type of project, but sadly we were denied. We really want to get this off the ground and I can assure you we would start immediately if we had the resources!

      To be totally open and honest, and please don’t take this as a personal attack, because we very much value innovative ideas coming out of this community, it does frustrate me when people say “shouldn’t the community be doing x, y, z?” when the reality is that there are just not enough people in this community who are able and/or willing to spend the kind of time and or money required. I will continue to put in my 20 unpaid hours per week, next to my extremely demanding day job, but meaningful progress will not come unless we get a major grant/donation and/or influx of skilled and dedicated volunteers. Again, please understand this is not directed at you, just a general observation and reality check!

      We’d be very open to have a call with you to discuss further, if you’re serious about pursuing this idea and open to collaboration with us. PM me and Markku if you’re interested!
       
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    25. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Fully understood - you guys do an amazing amount already. My comment wasn't meant as a, why aren't these staff doing more work! More of a, ideally I wish we could do it like this. Missed opportunity wasn't meant as mis-execution, just an if we had the resources, what a wonderful thing this could be.

      I wonder if the doctors who donate their time in the Doctors' Corner could help formulate the questions/data points if that project ever got off the ground.
       
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    26. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      There is discussion on a “tinnitus gene” which may predispose some people to tinnitus easier than others.

      Because of all your other symptoms, especially the neuropathy in your arms, have you considered either LDN or high dose Thiamine (B1)? Please look up Dr. Costantini and high dose B1 protocol. He helped thousands of people with neurological disorders and neuropathic pain by dosing a simple vitamin. At this point I don’t think you can lose. Also, if this is some autoimmune type issue you have going on LDN might really help you. Please look at these very cheap and accessible options prior to make a final decision.
       
    27. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Thanks - LDN is on my list but I have no neuropathy in my arms - I believe that is another poster.
       
    28. Sayeed

      Sayeed Member Benefactor

      Location:
      miami fl
      Tinnitus Since:
      4/1/21
      Cause of Tinnitus:
      unsure
      God bless you for putting your time and efforts into this. I sincerely appreciate it.

      It's weird how I didn't realize so many people have neuropathic pain and tinnitus. I do too.
       
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    29. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      Sorry that was meant for @roy1159.

      But try out that LDN!
       
    30. Autumnwillows

      Autumnwillows Member

      Tinnitus Since:
      April 2019
      Cause of Tinnitus:
      Loud door alarm in ear.
      This demon has slowly been killing me and as of now it's nearly won.
      I've lost everything trying to fight it and it's only become worse.

      A month ago a balloon popped next to me, my already horrendous tinnitus is now worse with an added deep rumble in both ears, I'm beyond sick and have made plans to kill myself in September, two years after getting it and in hopes of one last summer after spending last year inside and missing it all. I feel now I won't last the month, it's very disappointing.

      After many nights reading this forum fear of drugs and a worsening have made me go it alone, but as I'm going to take my life now I feel at least giving it a go won't hurt despite my crippling fears.

      The advice I need is:

      Is Zopiclone OK as I need sleep so badly I cry all day.

      I've also asked the doctor (2 weeks ago) to try Clonazepam. Please can anyone say, bearing in mind I don't plan on being around forever, if Clonazepam will help ease my suffering long enough to enjoy one last summer with my kids.

      Plus, I asked for Melatonin.

      Is there anything else that may provide relief? Even if its long term use is damaging, at this point that's not an issue.

      Thank you for taking the time to read my post.
      I need all the help I can get and so far I have none.

      Mia
       
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