Suicidal

[Zugzug]

No one considering suicide because of noise-induced or another stable form of hair cell or synapse damage should do so without even reading the research papers, knowing what a pharmacokinetics study is, knowing what a confidence interval is, what a p-value is, knowing how the phase 2 structure builds on phase 1, knowing how "word in quiet" tests are measured for statistically significant changes upon repetition, knowing how cubic polynomials are fitted to WIN data at various SNR levels to determine if there's statistically significant changes in SNR at 50% word recognition, knowing the science behind how PCA in the ear was discovered, knowing the preclinical findings that were repeated, knowing how they even measured VPA and CHIR in the ears of humans and guinea pigs, knowing that the GFP study showed a synergistic effect for LGR5+ proliferation, knowing what an LGR5+ cell is, knowing the difference between asymmetric division and transdifferentiation, knowing what perilymph is, knowing who Robert Langer is, knowing the cash flow of the company.

I'll stop there; that's just Frequency Therapeutics and FX-322.

Then there's knowing what BDNF is, what Ebselen is, what silence-RNA does, what Nanoparticle delivery is, what antioxidants do, what Retigabine does, what OTO-313 (NMDA glutamate antagonist) does. Then there's analyzing all of the clinical trial results and developing an informed opinion on timelines.

And that's just information. Then there's supplements and protocols, SSRIs and tri/tetracyclic antidepressants for coping purposes, books on acceptance to learn hobby changes for a few years, CBD, benzos under non-addictive schedules for mental health breaks, Kava regiments.

You may, understandably, think I just listed a lot of stuff. Fortunately, there are knowledgeable people on this forum. I learned most of that stuff over the course of many months with brain fog and most of the statistics stuff I knew just from before and would be happy to explain (I'm actually creating a document to help people with understanding the statistical concepts). I don't even have evidence of hair cell loss and I still consider all of that stuff above to be bare minimum literature.

I'm not doing this for applause so no one click "like" or "winner" or whatever. I'm only doing this because it's extremely important that suicidal people make informed decisions. A depressed person, especially, is going to be prone to doubts. They also have too much brain fog to disprove their doubts. It's really hard.

Even if the FX-322 Phase 2a results are underwhelming, it's still important to know that stuff to scope the future out.

 

[Jazzer]

'Nothing is fixed - until it's fixed.'
We just have to wait and see,
but avoid the 'bated breath' syndrome.

 

[PeteJ]

If you read his posts you will realise the guy is 21 and his ear issues started last year and he doesn't even have a diagnosis yet (neither do you, by the way, tinnitus, dizziness, hyperacusis etc are symptoms). Of course nothing is guaranteed. But if the symptoms started out of nowhere, he should try to find out why. I don't know. My opinion is that he should have a long and detailed consultation or at least a telehealth with a neurotologist (even though some doctors don't care if a loud test or a pressure test is going to hurt more than help, he already did a lot of tests and he can just show/mail the results so I don't think there's any risk).

I don't have a "diagnosis?" LMAO!

I HAVE SEVERE TINNITUS AND HYPERACUSIS. That's my diagnosis! I went through all the crap! The ENT Dr didn't do anything so the experience matches up with most here.

I declined that horrible tool they use that doesn't help but potentially causes a problem or hurts your ears more.

I want to be wrong about my conclusions regarding ear regeneration and researchers' prospects of treatment. I don't think you realize how wrong I want to be!!!

 

[PeteJ]

No one considering suicide because of noise-induced or another stable form of hair cell or synapse damage should do so without even reading the research papers, knowing what a pharmacokinetics study is, knowing what a confidence interval is, what a p-value is, knowing how the phase 2 structure builds on phase 1, knowing how "word in quiet" tests are measured for statistically significant changes upon repetition, knowing how cubic polynomials are fitted to WIN data at various SNR levels to determine if there's statistically significant changes in SNR at 50% word recognition, knowing the science behind how PCA in the ear was discovered, knowing the preclinical findings that were repeated, knowing how they even measured VPA and CHIR in the ears of humans and guinea pigs, knowing that the GFP study showed a synergistic effect for LGR5+ proliferation, knowing what an LGR5+ cell is, knowing the difference between asymmetric division and transdifferentiation, knowing what perilymph is, knowing who Robert Langer is, knowing the cash flow of the company.

I'll stop there; that's just Frequency Therapeutics and FX-322.

Then there's knowing what BDNF is, what Ebselen is, what silence-RNA does, what Nanoparticle delivery is, what antioxidants do, what Retigabine does, what OTO-313 (NMDA glutamate antagonist) does. Then there's analyzing all of the clinical trial results and developing an informed opinion on timelines.

And that's just information. Then there's supplements and protocols, SSRIs and tri/tetracyclic antidepressants for coping purposes, books on acceptance to learn hobby changes for a few years, CBD, benzos under non-addictive schedules for mental health breaks, Kava regiments.

You may, understandably, think I just listed a lot of stuff. Fortunately, there are knowledgeable people on this forum. I learned most of that stuff over the course of many months with brain fog and most of the statistics stuff I knew just from before and would be happy to explain (I'm actually creating a document to help people with understanding the statistical concepts). I don't even have evidence of hair cell loss and I still consider all of that stuff above to be bare minimum literature.

I'm not doing this for applause so no one click "like" or "winner" or whatever. I'm only doing this because it's extremely important that suicidal people make informed decisions. A depressed person, especially, is going to be prone to doubts. They also have too much brain fog to disprove their doubts. It's really hard.

Even if the FX-322 Phase 2a results are underwhelming, it's still important to know that stuff to scope the future out.

Blah, blah, blah. Just words.

Zzzzzzzzzzzzzzzzzzzzz

There's people with different "types" and levels of tinnitus and hyperacusis. There's stuff to read but there's no concrete progress in the way of actual treatment on people. The trials don't mean anything until there's feedback and actual real results that they communicate to the sufferers.

Hey, Zugzug, do you think that tinnitus sufferers who think their tinnitus is excruciatingly loud, should wait the 10 or 20+ years until the studies and hands-on treatments are at the stage in which it will be used on people in normal (at a typical hospital or medical clinic) settings?

 

[roy1159]

How do you know?

It's more that I hope it is. FX-322 seems promising and we should know soon enough how promising it actually is. They already showed great improvement in speech intelligibility so that's something.

I can relate to this. I feel like I'm wasting my life in so many ways now, too. I truly feel for anyone in their 20s (or younger) dealing with this, especially. Having built up a life first and then losing literally everything has its own challenges, too, though.

There are things that I will have permanently lost from this (since I'm in my early 40s now, the ability to ever have a child is one) even if my hearing gets restored one day. Similarly, you are going to mourn lost years and some opportunities. It's not fair and I'm so sorry.

Here is what I do to try to cope and this may or may not be helpful for you. I try to live for "future me" and try to love her in a way that I just can't love "present me". I think of it like being stranded on a deserted island. You truly *are* wasting time on that island until you get rescued, but if you just row out to drown yourself, you ensure that no rescue will ever take place.

It's hard and the day to day can be so agonizing. In your case, though, there are things that may help you even *right now* (like dealing with jaw misalignment). Please try to focus on that and even through all the pain, realize that there is a future you who still has other opportunities even if it's not exactly what you had planned.

I say this as someone who fights suicidal ideation a *lot* (literally daily) but wants so bad for "future me" to hear music again at least one more time even if I'm a very old woman by then (hypothetically, I truly don't think it will be that long but I'm prepared for it).

All that to say, suffering is not uniform and though I suffer a lot i know some people have it much worse and I don't blame them for giving up but that should be a very last resort and certainly shouldn't happen without rational planning and exhausting *all* your options which you haven't done at this point.

It's truly life changing (more like life destroying) at any age (assuming the symptoms are severe, otherwise we wouldn't be here. As much as I agree that one should live for the hope of a better future, I wish I'd at least have the coping mechanisms I had a few months ago in order to go through the days even though back then time was wasted away anyway. At least I could enjoy things that kept me sane and preserved my sense of self, but with the new symptoms and physical problems I can't do any of it. In all honesty I feel like a mutation, an anomaly, what are the odds of me ending up with these symptoms so severe at my age? Hell, what are the odds of even ending up in this thread or forum? I already failed at life big time but at least I'd like to believe that it's not my fault so at least I can pity myself and shift the blame.. not like that's helping me

 

[PeteJ]

Have you been living under a rock or something? We're getting the Phase 2 results of FX-322 any day now. The Frequency Therapeutics thread is probably one of the busiest on this entire forum.

Zzzzzzzzzzzzzzzzz

I would like to live under a rock.

Have you read the Frequency Therapeutics thread in the Research News section? That's buzzing and busy. I'm not educated or smart enough to understand half the issues discussed there, but members who are seem to be very rationally hopeful, so fingers crossed that we are gonna get good news sooner than later.

Not for a long time.

I don't know how anyone can 'read' complicated, technical jargon and material with screaming tinnitus in their ears and brain. It's a struggle for me even reading stuff here.

"buzzing and busy?" Sounds like my tinnitus.

 

[Chinmoku]

Zzzzzzzzzzzzzzzzz

I would like to live under a rock.

Not for a long time.

I don't know how anyone can 'read' complicated, technical jargon and material with screaming tinnitus in their ears and brain. It's a struggle for me even reading stuff here.

"buzzing and busy?" Sounds like my tinnitus.

PeteJ, we have been through this before, man.

@Zugzug's symptoms are horrid and maybe you didn't read his story, I can understand how much effort he put in that post to help everyone here have a little more hope and a more rational assessment of the option of ending one's pain in a - let's say - drastic way. I struggle enormously myself, by now even typing these simple messages is an effort. The electric screaming inside my left ear is insane, it's not even a sound anymore, I can't even describe it. So I get it, I'm suffering and worsening all the time, I don't know what's going on, doctors are useless, but why kill even the little hope we have? Fact checking, and I wrote this N pages ago, FX-322 worked in explanted cochleas, regenerated ear cells that re-synapsed, improved speech recognition scores, there is a lot of circumstantial evidence that it helps with high frequency hearing loss at least, which is where most people tinnitus resides. Restoring ear cells could reverse maladaptive brain plasticity even for people whose primary cause was not ear cells death (eg medication or stress etc).

There's a lot of "if" and it will still take time, but in less than one month we will know if it helps with tinnitus indicatively, and we will know more. I understand the irritation of reading all this with the prospect that it will be available in 2-5 years when every day, every hour, every minute is a battle, but why not recognize also the positive factual things that are there? It's not a magic wand but there are a lot of promising hints that FX-322 will work, and I'm talking about very concrete hints, not voodoo.

Let's be a little more objective please.

 

[Zugzug]

PeteJ, we have been through this before, man.

@Zugzug's symptoms are horrid and maybe you didn't read his story, I can understand how much effort he put in that post to help everyone here have a little more hope and a more rational assessment of the option of ending one's pain in a - let's say - drastic way. I struggle enormously myself, by now even typing these simple messages is an effort. The electric screaming inside my left ear is insane, it's not even a sound anymore, I can't even describe it. So I get it, I'm suffering and worsening all the time, I don't know what's going on, doctors are useless, but why kill even the little hope we have? Fact checking, and I wrote this N pages ago, FX-322 worked in explanted cochleas, regenerated ear cells that re-synapsed, improved speech recognition scores, there is a lot of circumstantial evidence that it helps with high frequency hearing loss at least, which is where most people tinnitus resides. Restoring ear cells could reverse maladaptive brain plasticity even for people whose primary cause was not ear cells death (eg medication or stress etc).

There's a lot of "if" and it will still take time, but in less than one month we will know if it helps with tinnitus indicatively, and we will know more. I understand the irritation of reading all this with the prospect that it will be available in 2-5 years when every day, every hour, every minute is a battle, but why not recognize also the positive factual things that are there? It's not a magic wand but there are a lot of promising hints that FX-322 will work, and I'm talking about very concrete hints, not voodoo.

Let's be a little more objective please.

The reason why I wrote that was not to rub bad brain fog in people's faces. It sounds a little stupid because at this point, I know quite a lot (although there's much I have to learn), but the reason why I know a lot is because I'm so disabled that I can't do anything at all, but sit at my computer 24/7. It took me roughly 2 years to accumulate the little knowledge that I have. It's more of a reflection of the amount of time I've spent learning about this stuff, as I have suicidal thoughts daily, than it is that I'm right in the head.

I don't say any of this or defend myself to prove anything to Pete, as I stopped caring what he thought a while ago. The reason why I wrote the original post is because I have a fear that a depressed person with bad brain fog could enter this thread and think that the science is ambiguous when it is not. And I stand by this even if the Phase 2a results are underwhelming.

I am trying to give people some sort of light to break out of the Dunning-Kruger mentality. If reading my post, which frankly included mostly information from corporate slides with some intro stats stuff, made you feel overwhelmed, what you should be thinking is that there's a lot to the science.

I don't have a problem with Pete doubting the science. Actually, I think it's good to provide another perspective besides "put all of your eggs in the FX-322 basket." But it is deeply irresponsible on a suicide thread to cast doubts without evidence.

Having brain fog sucks, but lacking the self-awareness to know that your brain fog probably shouldn't be the thing to influence a suicidal person is a whole different concept entirely.

 

[Backpacker]

I HAVE SEVERE TINNITUS AND HYPERACUSIS. That's my diagnosis.

You got tinnitus, ear pain, hyperacusis, ear fullness/plugged ear etc after an acoustic trauma. You were also mentioning some vestibular issues but you were saying those were caused by other issues so I am not sure if I should ask you more about vestibular symptoms.
You are also saying you have hearing loss. What I don't understand is: Did you have sudden hearing loss? Or not? Was your audiogram asymmetrical?

 

[FGG]

The reason why I wrote that was not to rub bad brain fog in people's faces. It sounds a little stupid because at this point, I know quite a lot (although there's much I have to learn), but the reason why I know a lot is because I'm so disabled that I can't do anything at all, but sit at my computer 24/7. It took me roughly 2 years to accumulate the little knowledge that I have. It's more of a reflection of the amount of time I've spent learning about this stuff, as I have suicidal thoughts daily, than it is that I'm right in the head.

I don't say any of this or defend myself to prove anything to Pete, as I stopped caring what he thought a while ago. The reason why I wrote the original post is because I have a fear that a depressed person with bad brain fog could enter this thread and think that the science is ambiguous when it is not. And I stand by this even if the Phase 2a results are underwhelming.

I am trying to give people some sort of light to break out of the Dunning-Kruger mentality. If reading my post, which frankly included mostly information from corporate slides with some intro stats stuff, made you feel overwhelmed, what you should be thinking is that there's a lot to the science.

I don't have a problem with Pete doubting the science. Actually, I think it's good to provide another perspective besides "put all of your eggs in the FX-322 basket." But it is deeply irresponsible on a suicide thread to cast doubts without evidence.

Having brain fog sucks, but lacking the self-awareness to know that your brain fog probably shouldn't be the thing to influence a suicidal person is a whole different concept entirely.

I think Pete (and others) have this idea that "if this worked, it would be on the front page of the news and if not it's either a fairytale or 20 years away..." and this is just wrong and a case of being uninformed about when new drugs and technologies hit the major news cycle (almost always after phase 3 results). The "researchers would be telling people if it worked..." idea seems logical if that were actually true and they weren't publishing anything but in this just case it's just not wanting to put in the effort to look or having it be difficult with brain fog--which I totally do get but that shouldn't be a reason to discourage others from looking like you said.

Frequency Therapeutics (for instance) has devoted an enormous amount of energy detailing the evidence for their drug in interviews, podcasts, Journal articles and more. It's all there. You just have to read it. It's not going to passively find you on your favorite news source until after phase 3.

No one (outside of the sufferers and their families) followed Luxturna treating a form of childhood blindness until after the drug was released and that's a huge medical advancement. Families went to forums to discuss the drug before that point.

And here is one of the areas where this forum really shines. It's such a well organized and thoughtful place to discuss the research. People on every thread but especially this one should at least check the research section out.

 

[RichieTheKid]

Guys, I know I come here literally every day but the situation I'm in is such that there's just one rope left, and I'm hanging off the edge of a cliff one handed, the other hand slipped last year. Literally everyday for me is survival. I feel like you guys are my friends somehow. Hanging on with me.

 

[xyz]

I think Pete (and others) have this idea that "if this worked, it would be on the front page of the news and if not it's either a fairytale or 20 years away..." and this is just wrong and a case of being uninformed about when new drugs and technologies hit the major news cycle (almost always after phase 3 results).

There are exceptions though. In 2019 there was huge wave of general media articles about Dr. Bao's research on TNF alpha blockers. They all sounded like this must be the cure. However this was just based on preclinical results in mice.

 

[just1morething]

'Nothing is fixed - until it's fixed.'
We just have to wait and see,
but avoid the 'bated breath' syndrome.

@Jazzer is right. All the technical jargon is useless if in the end it doesn't work. We've been let down many times before with some promising treatment. Most ENTs don't even follow the ear related biomed companies to my knowledge. Until something becomes available to them to treat tinnitus they don't have any need to mention it to their patients. I have seen an ENT today at Mayo and mentioned some promising treatment like FX-322 and they say nothing, probably because it's not available to them.

 

[FGG]

There are exceptions though. In 2019 there was huge wave of general media articles about Dr. Bao's research on TNF alpha blockers. They all sounded like this must be the cure. However this was just based on preclinical results in mice.

That usually only happens when an extremely well funded media/PR department gets involved. In this case, the University of Arizona used that to promote research being done there.

And I'm also willing to bet people more casually following biotech wouldn't have heard of Bao either.

 

[RichieTheKid]

I'm really sorry. Just wondering, and I don't mean this to be insulting at all, as we all have varying levels of brain fog throughout these problems.

Is your doubting of regenerative medicine because you don't understand it or because you don't think it's relevant to your problem?

As far as complaining, if there's any space to complain, it's a Suicidal thread on a support forum.

Just saw this. No I'm not doubting. Regenerative medicine may in fact be the ONLY way for most of my issues besides my spinal issues. It's just never been done before, something not much know about, I'm just anxious about it working.

 

[LilSass]

Hi everyone!

I don't usually post much these days, I work in front of a computer all day and with my chronic pain and migraines it can be difficult. On top of that, I just feel like out of all of my issues, tinnitus is currently at the bottom of the list. But I was reading this post and realized that I'm not the only one with other health issues - I can very much relate to everyone on here.

I experience migraines on a regular basis (worsened since Fall 2019 - at least one to two times per week), tinnitus since November 2019 from acute migraine meds the Dr. gave me (Cambia), and chronic pain in my neck/shoulders/upper back since May 2020 (from the upper cervical chiropractor I was seeing, who promised me she could help me with my migraines).

I was managing my migraines pretty well and was even having some success with magnesium. My Dr. wanted to put me on Propranalol, but I wasn't ready to go that route yet. I was feeling so good I decided to get a massage, which resulted in a three day migraine that even my acute migraine meds, Almotriptan, couldn't completely resolve (usually the worst migraine is two days). The pain was so bad that I went to the walk-in clinic, as my Dr. had just recently retired. He prescribed my Cambia, which resulted in the tinnitus, along with a host of other symptoms, including balance issues, anxiety and general unwellness. I was coping pretty well with the tinnitus, maybe because I though it would eventually go away. My other symptoms went away after a month or two, but the tinnitus remained.

I started seeing an Upper Cervical Chiro in March 2020. After much research, I found one in my city who practiced NUCCA, which is very rare - I felt like I had lucked out. After seeing her for two to three months I began experiencing chronic pain, particularly in my left shoulder, which is where 90% of my migraines start. I was in such a weakened state and trusted her (20 + years of experience) that I believed her when she said that it takes time to heal, etc. At the four month mark she decided that she couldn't treat me anymore and referred me to a neurological chiropractor, because you cannot just stop treating someone, you must refer them. I was devastated but realized it was for the best.

I went straight home and started researching other upper cervical chiros and found one who was willing to help me. He informed me that she had been adjusting me incorrectly the entire time - I was in total disbelief. How could someone with so much experience and a diagnosis based on x-rays get it so wrong? The good news is that the new chiro is helping me and I have seen an improvement in my pain and migraines. It takes a long time for muscles and tendons, etc. to heal, but it has gotten better. I also started to see a pain counsellor, which has helped, as I was left traumatized by the level of pain inflicted upon me, often waking up every morning to panic attacks. I also recently bought a puppy which I am training to be my service/support dog.

Things were getting better, I will never feel like my old self, but I was starting to feel a bit more normal. I was dealing with my conditions and starting to accept that this is now my life and trying to be grateful for all of the things I do have and focus on the things I can do, instead of the things I can't.

Then, in the middle of February I tested positive for COVID-19. I was incredibly disappointed and upset, as I had worked so hard to protect myself and my husband. Well, I made the mistake of trusting my neighbor. For six months we had an understanding and had occasionally hung out together and everything was good. She knew her boyfriend wasn't feeling well and still knocked on my door. Even when she wasn't feeling well she still knocked on my door and didn't tell me until she got tested. I feel like such a fool. She was irresponsible but I was careless. It was the week of hell. I am feeling back to normal, but recently experienced fatigue for a couple of days last week and now I can't tell if I'm experiencing anxiety, etc., or if it may be due to COVID-19. I will just have to wait and see - my nerves are shot.

I can hardly believe my bad luck with my health this past year or so. Before all of this my only real health concern were the migraines, which were manageable at the time. My life has been turned upside down and I am not the person I used to be. I used to wake up at 6 am and do yoga, prepare lunches, get ready for work and even had time to study (trying to advance my career), all before stating work. Now, I find it hard to get up in the morning. I just don't have the energy anymore. I feel older than my 46 years. I am getting by, but that feels like the best I will do.

I know that some have it worse than I do, and I really feel for them. I never knew such misery until I signed up here. It can be depressing and at the same time give me some relief to know that I'm not the only one. My conditions are such that no one really understands, I mean it's not like being diagnosed with cancer or some known disease that the doctors can define and treat. I'm so tired of doing research and making appointments, but I have to, because no one else will. I have enough good days to pull through, but sometimes I think it is just a tease. I thank God for my husband, he has been my rock!

Anyway, that's my story. I will keep praying for all of us, that things will get better and that we can still find some happiness in these dark days. This damn pandemic is certainly not helping.

Thinking of you all!

 

[Zugzug]

@Jazzer is right. All the technical jargon is useless if in the end it doesn't work. We've been let down many times before with some promising treatment. Most ENTs don't even follow the ear related biomed companies to my knowledge. Until something becomes available to them to treat tinnitus they don't have any need to mention it to their patients. I have seen an ENT today at Mayo and mentioned some promising treatment like FX-322 and they say nothing, probably because it's not available to them.

I want to underscore my point a little bit.

You are definitely right that there exists a world where the results are unbelievably good so who cares about the jargon? Short of the company literally falsifying data, it's important to understand that the worst the results could be is underwhelming.

The reason why the jargon may be of interest to someone is that it frames the problem from less of an unstable, binary event.

Say, for example, one has no understanding of the science -- not even a little. Then failure is failure. But if someone understands the core issues (i.e. histology is sound, guinea pig pharmacology is sound, but the humans' concentrations are less sound), then they are more naturally going to understand why the results are underwhelming.

They then can formulate opinions about delivery, as opposed to thinking it's all a hoax. Big difference.

 

[RichieTheKid]

I don't think anyone can tell what could potentially help without knowing your situation. Maybe you should make your own thread?

Hey that sounds cool but could I just make a post here? I kinda don't want my own thread all about me if that makes sense. I'm stalling on writing it because it makes me sad lol.

I'll summarize some of it. I was poisoned by organophosphate pretty hardcore, developed multiple chemical sensitivity without knowing, and it made me more prone to bad side effects because of inadequate toxin excretion. I took a lot of strong medicine and did harmful things to myself like smoke weed and there was loud music at times - no headphones. I developed visual snow syndrome, strange visual processing problems, tinnitus, hyperacusis and am dealing with cervical spondylosis probably caused by hypermobile joints as well. It's a lot of things going on but I know there is a path for my recovery but at the moment it's tough surviving.

I have other symptoms as well, like added migraine like/seizure like disassociation at times. And slight low frequency hearing loss, on the lower end of still normal range, in the right ear where the tinnitus is worse which is my hope that I'd be a candidate for FX-322.

I don't know what I have. Brain damage? CNS damage? Autoimmune? Connective tissue disorder resulting in ANS dysfunction? Lyme? My neck problems causing nerve problems? Something else? Myasthenia Gravis (I only mentioned this due to the poisoning and how the Acetylcholinesterase stuff involved is similar to organophosphate poisoning. I don't know what's fully wrong with me but all I do know is I want FX-322 because it got worse last year and I've been surviving day in and day out and I'll try any regenerative medicine for my ears at this point.

 

[ajc]

Are there any stats on if those with tinnitus commit more suicides than those without? Need for a friend.

 

[just1morething]

as opposed to thinking it's all a hoax

I don't think it's a hoax, just unproven to help tinnitus and unavailable at this point. I've had some IT injections in the past at Paparella and Shea. I hope it works, but if it does when will it become available to the ENTs?

The only thing I have heard today was the same old things: TRT, CBT, and hearing aids. I have an appointment for CBT and hearing aids scheduled in a month or so. I actually have 2 sets of hearing aids already that I bought online. I'm still looking at TMD but that could be a dead end. I do have a bad left TMJ. I did see a TMJ surgeon a couple weeks ago and he scheduled the ENT appointment today.

 

[roy1159]

I was informed this morning that my neuropathic pain will be chronic. I'm not even mad, I can't even cry about this - I'm laughing instead because it's so surreal. I'm just done with this cruel joke that is my life, I've been suicidal for the last 9 months because of the tinnitus, hearing problems and recent physical problems but tried to remain optimistic that things would turn out well in the end (knowing that they probably won't get better). In return I acquired physical CHRONIC conditions that plague the middle aged and elderly (don't mean to disrespect) even though I've not put myself at risk.From family and doctors all I get is 'you don't want help or 'go to more doctors' and 'therapy will solve your problems'... I've tried explaining my situation to them but they are that dense... my parents even told me to leave them alone because THEY want to live. They won't ever get any of it. I'm not mad at them because they did try to help me, it's not their fault that nothing could be resolved.

I feel ashamed for being alive, it's fucking humiliating at this point. At this point I don't want to live, I really don't. Got nothing to live for anyways, endure another day of pain and suffering so I can go through it all again the next day? It's not like I can live or better myself like I did 15 months ago, I'm 21 ffs.

As soon as my legs will allow me to walk properly I'm done with life, I'm ordering a train ticket from now so I won't chicken out this time as well, I don't care anymore.

 

[Zugzug]

I was informed this morning that my neuropathic pain will be chronic. I'm not even mad, I can't even cry about this - I'm laughing instead because it's so surreal. I'm just done with this cruel joke that is my life, I've been suicidal for the last 9 months because of the tinnitus, hearing problems and recent physical problems but tried to remain optimistic that things would turn out well in the end (knowing that they probably won't get better). In return I acquired physical CHRONIC conditions that plague the middle aged and elderly (don't mean to disrespect) even though I've not put myself at risk.From family and doctors all I get is 'you don't want help or 'go to more doctors' and 'therapy will solve your problems'... I've tried explaining my situation to them but they are that dense... my parents even told me to leave them alone because THEY want to live. They won't ever get any of it. I'm not mad at them because they did try to help me, it's not their fault that nothing could be resolved.

I feel ashamed for being alive, it's fucking humiliating at this point. At this point I don't want to live, I really don't. Got nothing to live for anyways, endure another day of pain and suffering so I can go through it all again the next day? It's not like I can live or better myself like I did 15 months ago, I'm 21 ffs.

As soon as my legs will allow me to walk properly I'm done with life, I'm ordering a train ticket from now so I won't chicken out this time as well, I don't care anymore.

Have you ever tried Gabapentin or Pregabalin for the nerve pain? Cymbalta is also an anti-depressant commonly prescribed for diabetic nerve pain.

I'm so sorry. I know what it's like to feel ashamed of being alive. Maybe try to get the pain under control (if possible) and then figure out other ways to develop your self esteem. What are your hobbies? If I recall, you like programming?

 

[Zugzug]

Hi everyone!

I don't usually post much these days, I work in front of a computer all day and with my chronic pain and migraines it can be difficult. On top of that, I just feel like out of all of my issues, tinnitus is currently at the bottom of the list. But I was reading this post and realized that I'm not the only one with other health issues - I can very much relate to everyone on here.

I experience migraines on a regular basis (worsened since Fall 2019 - at least one to two times per week), tinnitus since November 2019 from acute migraine meds the Dr. gave me (Cambia), and chronic pain in my neck/shoulders/upper back since May 2020 (from the upper cervical chiropractor I was seeing, who promised me she could help me with my migraines).

I was managing my migraines pretty well and was even having some success with magnesium. My Dr. wanted to put me on Propranalol, but I wasn't ready to go that route yet. I was feeling so good I decided to get a massage, which resulted in a three day migraine that even my acute migraine meds, Almotriptan, couldn't completely resolve (usually the worst migraine is two days). The pain was so bad that I went to the walk-in clinic, as my Dr. had just recently retired. He prescribed my Cambia, which resulted in the tinnitus, along with a host of other symptoms, including balance issues, anxiety and general unwellness. I was coping pretty well with the tinnitus, maybe because I though it would eventually go away. My other symptoms went away after a month or two, but the tinnitus remained.

I started seeing an Upper Cervical Chiro in March 2020. After much research, I found one in my city who practiced NUCCA, which is very rare - I felt like I had lucked out. After seeing her for two to three months I began experiencing chronic pain, particularly in my left shoulder, which is where 90% of my migraines start. I was in such a weakened state and trusted her (20 + years of experience) that I believed her when she said that it takes time to heal, etc. At the four month mark she decided that she couldn't treat me anymore and referred me to a neurological chiropractor, because you cannot just stop treating someone, you must refer them. I was devastated but realized it was for the best.

I went straight home and started researching other upper cervical chiros and found one who was willing to help me. He informed me that she had been adjusting me incorrectly the entire time - I was in total disbelief. How could someone with so much experience and a diagnosis based on x-rays get it so wrong? The good news is that the new chiro is helping me and I have seen an improvement in my pain and migraines. It takes a long time for muscles and tendons, etc. to heal, but it has gotten better. I also started to see a pain counsellor, which has helped, as I was left traumatized by the level of pain inflicted upon me, often waking up every morning to panic attacks. I also recently bought a puppy which I am training to be my service/support dog.

Things were getting better, I will never feel like my old self, but I was starting to feel a bit more normal. I was dealing with my conditions and starting to accept that this is now my life and trying to be grateful for all of the things I do have and focus on the things I can do, instead of the things I can't.

Then, in the middle of February I tested positive for COVID-19. I was incredibly disappointed and upset, as I had worked so hard to protect myself and my husband. Well, I made the mistake of trusting my neighbor. For six months we had an understanding and had occasionally hung out together and everything was good. She knew her boyfriend wasn't feeling well and still knocked on my door. Even when she wasn't feeling well she still knocked on my door and didn't tell me until she got tested. I feel like such a fool. She was irresponsible but I was careless. It was the week of hell. I am feeling back to normal, but recently experienced fatigue for a couple of days last week and now I can't tell if I'm experiencing anxiety, etc., or if it may be due to COVID-19. I will just have to wait and see - my nerves are shot.

I can hardly believe my bad luck with my health this past year or so. Before all of this my only real health concern were the migraines, which were manageable at the time. My life has been turned upside down and I am not the person I used to be. I used to wake up at 6 am and do yoga, prepare lunches, get ready for work and even had time to study (trying to advance my career), all before stating work. Now, I find it hard to get up in the morning. I just don't have the energy anymore. I feel older than my 46 years. I am getting by, but that feels like the best I will do.

I know that some have it worse than I do, and I really feel for them. I never knew such misery until I signed up here. It can be depressing and at the same time give me some relief to know that I'm not the only one. My conditions are such that no one really understands, I mean it's not like being diagnosed with cancer or some known disease that the doctors can define and treat. I'm so tired of doing research and making appointments, but I have to, because no one else will. I have enough good days to pull through, but sometimes I think it is just a tease. I thank God for my husband, he has been my rock!

Anyway, that's my story. I will keep praying for all of us, that things will get better and that we can still find some happiness in these dark days. This damn pandemic is certainly not helping.

Thinking of you all!

I'm really sorry. Cervical spine problems sound horrible, along with the migraines. Fortunately you found a NUCCA chiropractor to help. I'm also sorry you got COVID-19 so close to the vaccine finish line.

I wonder, have you tried medical marijuana? I wonder if it could help the pain and the migraines. Or even, at least CBD.

 

[Zugzug]

Hey that sounds cool but could I just make a post here? I kinda don't want my own thread all about me if that makes sense. I'm stalling on writing it because it makes me sad lol.

I'll summarize some of it. I was poisoned by organophosphate pretty hardcore, developed multiple chemical sensitivity without knowing, and it made me more prone to bad side effects because of inadequate toxin excretion. I took a lot of strong medicine and did harmful things to myself like smoke weed and there was loud music at times - no headphones. I developed visual snow syndrome, strange visual processing problems, tinnitus, hyperacusis and am dealing with cervical spondylosis probably caused by hypermobile joints as well. It's a lot of things going on but I know there is a path for my recovery but at the moment it's tough surviving.

I have other symptoms as well, like added migraine like/seizure like disassociation at times. And slight low frequency hearing loss, on the lower end of still normal range, in the right ear where the tinnitus is worse which is my hope that I'd be a candidate for FX-322.

I don't know what I have. Brain damage? CNS damage? Autoimmune? Connective tissue disorder resulting in ANS dysfunction? Lyme? My neck problems causing nerve problems? Something else? Myasthenia Gravis (I only mentioned this due to the poisoning and how the Acetylcholinesterase stuff involved is similar to organophosphate poisoning. I don't know what's fully wrong with me but all I do know is I want FX-322 because it got worse last year and I've been surviving day in and day out and I'll try any regenerative medicine for my ears at this point.

I'm a little confused. Did you experience the organophosphate poisoning from something else and then afterwards, take strong meds and smoke weed?

I'm not really sure about cervical spondylosis, but it sounds horrible. I'm also not sure about Myasthenia Gravis, other than knowing it's a rare disease.

I find your CNS symptoms to be curious. My brother has visual snow syndrome, migraines, and disassociation/derealization. He said that there's a link between all three of them. Also, obviously there's a link with tinnitus. My guess is the same sensitive brains that get tinnitus and hyperacusis get visual snow syndrome.

You say you have low pitched hearing loss with tinnitus. Is your tinnitus also low pitched? Just giving it to you straight, it may take a few years for FX-322 to help low frequencies -- we don't know yet, but they are working on it.

Do you think your CNS symptoms are from the poisoning?

 

[KWC]

Hi everyone!

I don't usually post much these days, I work in front of a computer all day and with my chronic pain and migraines it can be difficult. On top of that, I just feel like out of all of my issues, tinnitus is currently at the bottom of the list. But I was reading this post and realized that I'm not the only one with other health issues - I can very much relate to everyone on here.

I experience migraines on a regular basis (worsened since Fall 2019 - at least one to two times per week), tinnitus since November 2019 from acute migraine meds the Dr. gave me (Cambia), and chronic pain in my neck/shoulders/upper back since May 2020 (from the upper cervical chiropractor I was seeing, who promised me she could help me with my migraines).

I was managing my migraines pretty well and was even having some success with magnesium. My Dr. wanted to put me on Propranalol, but I wasn't ready to go that route yet. I was feeling so good I decided to get a massage, which resulted in a three day migraine that even my acute migraine meds, Almotriptan, couldn't completely resolve (usually the worst migraine is two days). The pain was so bad that I went to the walk-in clinic, as my Dr. had just recently retired. He prescribed my Cambia, which resulted in the tinnitus, along with a host of other symptoms, including balance issues, anxiety and general unwellness. I was coping pretty well with the tinnitus, maybe because I though it would eventually go away. My other symptoms went away after a month or two, but the tinnitus remained.

I started seeing an Upper Cervical Chiro in March 2020. After much research, I found one in my city who practiced NUCCA, which is very rare - I felt like I had lucked out. After seeing her for two to three months I began experiencing chronic pain, particularly in my left shoulder, which is where 90% of my migraines start. I was in such a weakened state and trusted her (20 + years of experience) that I believed her when she said that it takes time to heal, etc. At the four month mark she decided that she couldn't treat me anymore and referred me to a neurological chiropractor, because you cannot just stop treating someone, you must refer them. I was devastated but realized it was for the best.

I went straight home and started researching other upper cervical chiros and found one who was willing to help me. He informed me that she had been adjusting me incorrectly the entire time - I was in total disbelief. How could someone with so much experience and a diagnosis based on x-rays get it so wrong? The good news is that the new chiro is helping me and I have seen an improvement in my pain and migraines. It takes a long time for muscles and tendons, etc. to heal, but it has gotten better. I also started to see a pain counsellor, which has helped, as I was left traumatized by the level of pain inflicted upon me, often waking up every morning to panic attacks. I also recently bought a puppy which I am training to be my service/support dog.

Things were getting better, I will never feel like my old self, but I was starting to feel a bit more normal. I was dealing with my conditions and starting to accept that this is now my life and trying to be grateful for all of the things I do have and focus on the things I can do, instead of the things I can't.

Then, in the middle of February I tested positive for COVID-19. I was incredibly disappointed and upset, as I had worked so hard to protect myself and my husband. Well, I made the mistake of trusting my neighbor. For six months we had an understanding and had occasionally hung out together and everything was good. She knew her boyfriend wasn't feeling well and still knocked on my door. Even when she wasn't feeling well she still knocked on my door and didn't tell me until she got tested. I feel like such a fool. She was irresponsible but I was careless. It was the week of hell. I am feeling back to normal, but recently experienced fatigue for a couple of days last week and now I can't tell if I'm experiencing anxiety, etc., or if it may be due to COVID-19. I will just have to wait and see - my nerves are shot.

I can hardly believe my bad luck with my health this past year or so. Before all of this my only real health concern were the migraines, which were manageable at the time. My life has been turned upside down and I am not the person I used to be. I used to wake up at 6 am and do yoga, prepare lunches, get ready for work and even had time to study (trying to advance my career), all before stating work. Now, I find it hard to get up in the morning. I just don't have the energy anymore. I feel older than my 46 years. I am getting by, but that feels like the best I will do.

I know that some have it worse than I do, and I really feel for them. I never knew such misery until I signed up here. It can be depressing and at the same time give me some relief to know that I'm not the only one. My conditions are such that no one really understands, I mean it's not like being diagnosed with cancer or some known disease that the doctors can define and treat. I'm so tired of doing research and making appointments, but I have to, because no one else will. I have enough good days to pull through, but sometimes I think it is just a tease. I thank God for my husband, he has been my rock!

Anyway, that's my story. I will keep praying for all of us, that things will get better and that we can still find some happiness in these dark days. This damn pandemic is certainly not helping.

Thinking of you all!

@LilSass thoughts and prayers are with you. As someone struggling with right ear tinnitus and jaw issues, I cannot really relate to what you have gone through and are going through. I am sending you positive energy and best wishes and am confident you will see the light at the end of the tunnel.

Kwc

 

[__nico__]

I've been away from this site as I grow more and more acutely suicidal and unable to relate to the vast majority of tinnitus and hyperacusis sufferers...

Needless to say, I have had enough. Things went from bad to so ungodly comically horrible in the span of just a few days. I can't relate to regenerative medicine because they will not help my problems.

I have since become deeply immersed in various pro euthanasia/pro choice for suicide groups. They have all helped me a ton.

My life has crumbled and is economically burdensome. My time is up.

 

[FGG]

I've been away from this site as I grow more and more acutely suicidal and unable to relate to the vast majority of tinnitus and hyperacusis sufferers...

Needless to say, I have had enough. Things went from bad to so ungodly comically horrible in the span of just a few days. I can't relate to regenerative medicine because they will not help my problems.

I have since become deeply immersed in various pro euthanasia/pro choice for suicide groups. They have all helped me a ton.

My life has crumbled and is economically burdensome. My time is up.

I'm so sorry

I realize this may be grasping at straws but is it majority ear related or other systemic stuff (I know you had mentioned cancer...)? I ask because if it really is the end, would you consider last ditch efforts like getting Ebselen from overseas to try?

 

[Zugzug]

I've been away from this site as I grow more and more acutely suicidal and unable to relate to the vast majority of tinnitus and hyperacusis sufferers...

Needless to say, I have had enough. Things went from bad to so ungodly comically horrible in the span of just a few days. I can't relate to regenerative medicine because they will not help my problems.

I have since become deeply immersed in various pro euthanasia/pro choice for suicide groups. They have all helped me a ton.

My life has crumbled and is economically burdensome. My time is up.

Definitely explore all of your options. I'm sure you know this, but FX-322 results will be out any day.

I am curious, since you said some of your problems began after steroid use, what are the theories behind what's going on? Have you consulted multiple high level rheumatologists about this?

I'm really sorry that you've had a life of suffering. So unfair.

 

[RichieTheKid]

Have you ever tried Gabapentin or Pregabalin for the nerve pain? Cymbalta is also an anti-depressant commonly prescribed for diabetic nerve pain.

I'm so sorry. I know what it's like to feel ashamed of being alive. Maybe try to get the pain under control (if possible) and then figure out other ways to develop your self esteem. What are your hobbies? If I recall, you like programming?

I was informed this morning that my neuropathic pain will be chronic. I'm not even mad, I can't even cry about this - I'm laughing instead because it's so surreal. I'm just done with this cruel joke that is my life, I've been suicidal for the last 9 months because of the tinnitus, hearing problems and recent physical problems but tried to remain optimistic that things would turn out well in the end (knowing that they probably won't get better). In return I acquired physical CHRONIC conditions that plague the middle aged and elderly (don't mean to disrespect) even though I've not put myself at risk.From family and doctors all I get is 'you don't want help or 'go to more doctors' and 'therapy will solve your problems'... I've tried explaining my situation to them but they are that dense... my parents even told me to leave them alone because THEY want to live. They won't ever get any of it. I'm not mad at them because they did try to help me, it's not their fault that nothing could be resolved.

I feel ashamed for being alive, it's fucking humiliating at this point. At this point I don't want to live, I really don't. Got nothing to live for anyways, endure another day of pain and suffering so I can go through it all again the next day? It's not like I can live or better myself like I did 15 months ago, I'm 21 ffs.

As soon as my legs will allow me to walk properly I'm done with life, I'm ordering a train ticket from now so I won't chicken out this time as well, I don't care anymore.

Don't be ashamed for being alive at least. I know how tough life is as well. But if you have at least touched somebody else's life in your lifetime, that's all that matters. I know it sounds cliché but it's true.

 

[RichieTheKid]

Definitely explore all of your options. I'm sure you know this, but FX-322 results will be out any day.

I am curious, since you said some of your problems began after steroid use, what are the theories behind what's going on? Have you consulted multiple high level rheumatologists about this?

I'm really sorry that you've had a life of suffering. So unfair.

If I desperately need FX-322, even if it's just small improvement, and soon, and I don't live in the US, what can I do ZugZug?