Suicidal

[PeteJ]

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.

Results any day? Yeah, right.

P.S. I don't care what you have to say either. In other words, the feelings are mutual.

 

[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).

@roy1159, you are saying your symptoms started after a mild cold or something. Did you have Upper Respiratory Infection meaning your throat hurt or did you have severe bouts of cough and blow your nose a lot durig the cold? Did you have any pain in your ears during the cold? Did you have any other symptoms during or after that period? Nausea triggered by anything? Motion sickness? Light sensitivity?

Don't get me wrong, I'm speculating. I would just like you to try literally everything that doesn't hurt like, for example, herbal diuretic and Meniere's diet (avoiding salt and coffee etc) and to try to find a more knowledgable doctor. Also, I cannot guarantee that all neurotologists are more knowledgable than ENTs. They *might* know more because inner ear is their field.

21, exactly. No need to say more.

I am very interested in regenerative science and I think that the concept of repairing the inner ear is amazing.

My point is many people discuss this in the related section but there are no official updates from researchers.

If there is, point it out.

This site would be jumping if the news was revolutionary if you know what I mean. I am skeptical but I want to be wrong. Trust me.

 

[AliasM]

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

I would love to know how many veteran deaths are marked down as PTSD rather than tinnitus. It seems whenever a veteran takes their life, it is automatically assumed PTSD by all, including the coroner.

 

[Syb]

Hey guys... Sorry, I hope this is the right place to ask.

I've been feeling very suicidal lately. I feel like I have no right to complain here because some of you have been in this hell for so much longer than me. I just... can't accept living like this. It's been almost three months of this and physical therapy isn't helping all that much. I think I'm only trying to convince myself it is, at this point.

The past weeks have been... too much. The reactivity to sound / distortions (which are supposedly not hyperacusis yet audiologist has no idea what causes them?) are making me lose my mind. I'm not even sure if my ears react to sound or if it's psychological at this point. But I can't enjoy anything anymore. I'm supposed to be looking for a job cause I'm jobless and out of money. Instead I'm wasting what little money I have left on supplements and whatnot hoping they will help. They hardly do anything.

My partner is begging me to try antidepressants. I'm usually against them but I don't know how much longer I will last like this. Especially considering I've begin thinking about dying even when I'm not having a panic attack. So maybe I should try them as a last resort.

I know some ADs can make tinnitus and related symptoms worse, which is why I'm extremely wary. Not like my doctor will know which one to prescribe. She put me on Effexor 4 years ago and had to stop them after 3 months because they made me severely anxious and suicidal all the time.

The ENT suggested about Amitriptyline/Nortriptyline to help me sleep (I sleep fine... ish, with muscle relaxants), but I declined at the time. I took them in the past and they gave me palpitations and night terrors.

If anyone has a suggestion... anything to keep me going, maybe. Please... Thanks. I need to get my life back before I lose everything, or my own life.

 

[roy1159]

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'll be honest. I don't want to deal with any of this anymore. Not the tinnitus, not the hearing problem, not the neuropathic pain. I'm tired of surviving, I've survived so far hoping for reclaiming some of the quality of life I had before. Now it seems like a distant unreachable fantasy. I'm tired of seeing doctors, doing medical tests that don't even lead to treatments. I was brought to this world to live life, not to suffer like this through it, especially not at this age. I'm sure it would be too much for people older than me as well. I have also come to the realization (sadly) that my situation is in the severe end of the spectrum regarding tinnitus and hearing problems and there is truly nothing that can be done. As for my hobbies, I played piano, loved reading about anything or watch movies or TV, played tennis regularly. I was actually supposed to start studying CompSci but of course had to cancel because the severe tinnitus doesn't allow my mind to function, I can barely read through the threads here and comprehend everything that is written. None of my hobbies is doable in my current state (physical and mental state alike). As I said already, nothing of it makes sense but i don't care anymore, I just want out of this nightmare, I'm quite sad that my life went down the drain like that and I wish there was any concrete help, that something would get better, but I guess that's my destiny. They can write my suicide as a result of mental illness but I know full well the reason I ended my life.

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.

I agree in a sense but at this point I can't take any of this anymore and it's not enough for me to go on further. I'm really at the end of my rope. Enough is enough I guess, I'm out of gas.

 

[SadMan]

The ENT suggested about Amitriptyline/Nortriptyline to help me sleep (I sleep fine... ish, with muscle relaxants), but I declined at the time. I took them in the past and they gave me palpitations and night terrors.

I started on Amitriptyline. I took it for 2 days and I thought it increased my tinnitus. But the tinnitus was also loud when I was not taking it. I will keep trying to take it. I just took a break for 1 day. I am now on day 6.

11.03.2021 50 mg
12.03.2021 50 mg
13.03.2021 0 mg
14.03.2021 50 mg
15.03.2021 50 mg
16.03.2021 50 mg

The link below says Amitriptyline is useful. What do you think about this? Would it help with acoustic trauma induced tinnitus?

Efficacy of amitriptyline in the treatment of subjective tinnitus

 

[RichieTheKid]

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?

Hey, thanks for the reply. Yes the poisoning happened first, making my body ten times more vulnerable to the destructive behaviours which happened after. I am convinced I would have been slightly better off it weren't for that catalyst.

Now I am fully aware FX-322 does not as far as we know today reach the lower frequencies yet, but my tinnitus in the right ear is high pitched, and I'm at a point where my neck is difficult to deal with not impossible, but what I need to do is try FX-322 so if there's any EHF damage at all and it helps my right ear just a bit, I'd be able to survive more and wait until one day I can pray I'm a candidate for artificial disc replacement. If those two issues can be addressed, I will be able to wait the excruciating years until FX-322 and other drugs reach lower frequencies and synapse repair as well, then I'd tackle the visual snow syndrome last. I do know there is some research happening and big moves being made and I follow the visual snow syndrome group. But as of now it's very hard, so even if FX-322 just provides me some relief, that's more than I could ask for, I just need it to help me enough that I can survive longer. Even if it means finding a big sum of cash to do it, I'll have to man.

I'll be honest. I don't want to deal with any of this anymore. Not the tinnitus, not the hearing problem, not the neuropathic pain. I'm tired of surviving, I've survived so far hoping for reclaiming some of the quality of life I had before. Now it seems like a distant unreachable fantasy. I'm tired of seeing doctors, doing medical tests that don't even lead to treatments. I was brought to this world to live life, not to suffer like this through it, especially not at this age. I'm sure it would be too much for people older than me as well. I have also come to the realization (sadly) that my situation is in the severe end of the spectrum regarding tinnitus and hearing problems and there is truly nothing that can be done. As for my hobbies, I played piano, loved reading about anything or watch movies or TV, played tennis regularly. I was actually supposed to start studying CompSci but of course had to cancel because the severe tinnitus doesn't allow my mind to function, I can barely read through the threads here and comprehend everything that is written. None of my hobbies is doable in my current state (physical and mental state alike). As I said already, nothing of it makes sense but i don't care anymore, I just want out of this nightmare, I'm quite sad that my life went down the drain like that and I wish there was any concrete help, that something would get better, but I guess that's my destiny. They can write my suicide as a result of mental illness but I know full well the reason I ended my life.

I agree in a sense but at this point I can't take any of this anymore and it's not enough for me to go on further. I'm really at the end of my rope. Enough is enough I guess, I'm out of gas.

Hey Roy, I truly wish you the best buddy.

 

[LilSass]

Hi @Zugzug! I have tried medical marijuana but there is no discernible difference to the pain or migraines. If it's really bad I'll have a little smoke to help me sleep, but that's about it. I've just ordered some Kratom and will be trying it soon. Also looking into Kava Kava. The neurologist wants to put me on amitriptyline but I am reluctant for obvious reasons.

I have read your story and I have the upmost sympathy for your situation. Life is anything but fair - I don't think I realized how much until this past year or so. I regularly fight suicidal thoughts, which I never had before all of this. I have found a way that will be painless and not leave a disfigured body to be discovered. I don't think I have it in me to do it at this point, but somehow knowing there is a way out comforts me. I don't want to die, but I'm not sure I want to live like this anymore. I will keep holding on and praying that things will get better, for all of us.

Hi @KWC. Thank you for your well wishes - same to you! I hope that your tinnitus and jaw issues will resolve soon. We all need as much positive energy as possible right now.

 

[Zugzug]

I'll be honest. I don't want to deal with any of this anymore. Not the tinnitus, not the hearing problem, not the neuropathic pain. I'm tired of surviving, I've survived so far hoping for reclaiming some of the quality of life I had before. Now it seems like a distant unreachable fantasy. I'm tired of seeing doctors, doing medical tests that don't even lead to treatments. I was brought to this world to live life, not to suffer like this through it, especially not at this age. I'm sure it would be too much for people older than me as well. I have also come to the realization (sadly) that my situation is in the severe end of the spectrum regarding tinnitus and hearing problems and there is truly nothing that can be done. As for my hobbies, I played piano, loved reading about anything or watch movies or TV, played tennis regularly. I was actually supposed to start studying CompSci but of course had to cancel because the severe tinnitus doesn't allow my mind to function, I can barely read through the threads here and comprehend everything that is written. None of my hobbies is doable in my current state (physical and mental state alike). As I said already, nothing of it makes sense but i don't care anymore, I just want out of this nightmare, I'm quite sad that my life went down the drain like that and I wish there was any concrete help, that something would get better, but I guess that's my destiny. They can write my suicide as a result of mental illness but I know full well the reason I ended my life.

I can connect on a number of levels. I completely know what you mean about being "tired of surviving." At the beginning, I cried all of the time. Now I rarely cry. The suicidal thoughts are just deep and numbing. At the beginning, I felt sort of strong like I was battling the suicidal urges. Now I feel like the main reason is just fear of messing it up or ruining my loved ones' lives. It's extremely depressing to not even feel strength from really rough battles. I hope to be rewarded for this someday.

Wow, we had similar hobbies. My two biggest hobbies, prior to this, were tennis and piano (along with online games and watching sports). I used to be pretty serious about tennis; I miss it so much.

I do wonder, and I'm just throwing this out there, if there's some combo of drugs that would allow you to program. For example, maybe an antidepressant to make the tinnitus a little less annoying and maybe an upper to clear the brain fog. I say this because I kill a lot of my time just learning math. This is not possible with brain fog, but is somewhat possible with coffee.

 

[roy1159]

I can connect on a number of levels. I completely know what you mean about being "tired of surviving." At the beginning, I cried all of the time. Now I rarely cry. The suicidal thoughts are just deep and numbing. At the beginning, I felt sort of strong like I was battling the suicidal urges. Now I feel like the main reason is just fear of messing it up or ruining my loved ones' lives. It's extremely depressing to not even feel strength from really rough battles. I hope to be rewarded for this someday.

Wow, we had similar hobbies. My two biggest hobbies, prior to this, were tennis and piano (along with online games and watching sports). I used to be pretty serious about tennis; I miss it so much.

I do wonder, and I'm just throwing this out there, if there's some combo of drugs that would allow you to program. For example, maybe an antidepressant to make the tinnitus a little less annoying and maybe an upper to clear the brain fog. I say this because I kill a lot of my time just learning math. This is not possible with brain fog, but is somewhat possible with coffee.

At this point I'm completely numb as well. I don't even fear botching it as the method should provide certain death. Glad to hear we had common interests. I feel like my soul was sucked out me along this battle. The ADs I've tried didn't help in improving lost concentration, I can't for the life me imagine how people maintain careers that requires high concentration with severe intrusive tinnitus, I guess they don't. I'm a burden on myself and especially my parents. My fight is officially over, sadly.

 

[MBH]

@SadMan, from what I know from here, Amitriptyline is used sleep. For sleep I use Tylenol pm, fan, sound machine. As for taking meds, it's a crazy shot of what works for anxiety. I really like to go on car rides with music on low. It works well for me.

 

[Zugzug]

At this point I'm completely numb as well. I don't even fear botching it as the method should provide certain death. Glad to hear we had common interests. I feel like my soul was sucked out me along this battle. The ADs I've tried didn't help in improving lost concentration, I can't for the life me imagine how people maintain careers that requires high concentration with severe intrusive tinnitus, I guess they don't. I'm a burden on myself and especially my parents. My fight is officially over, sadly.

Didn't you say your doctor wants to test your extended ranges?
What if a drug can drastically help you?

 

[roy1159]

Didn't you say your doctor wants to test your extended ranges?
What if a drug can drastically help you?

Even if the extended audiometry may supply the reason for my hearing problems (and tinnitus of course), it doesn't change my reality. I can't really think of a drug that would drastically help me, at this moment there is none. I know FX-322 should help me but my situation is too dire for me to survive until then. I've put my life on hold for almost 16 months, with things getting worse. I can't wait another 2-5 years, this amount of time seems like an eternity to me.

 

[PeteJ]

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!

If tinnitus is at the bottom of your concerns, why are you in this thread?

Keep the COVID-19 crap out of it too. I also live in Ontario and there is no crisis. Stop fear mongering and spreading FUD. The local hospitals are practically empty and I am sure yours is, too.

 

[PeteJ]

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.

There's nothing official released about this yet. Zugzug is just BSing and crapping on people because he read a bunch of posts in the research section.

It's not about doubt. It's about a lack of concrete real life application and actual official updates and progress.

This can consist of leaks in publications or actual researchers in the field releasing official public statements and information.

You also need treatments on a large segment of the population. It's nice to learn of success stories but it's not enough.

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.

You're a real jerk.

 

[PeteJ]

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?

I had some vertigo that needed treatment at physio before I got tinnitus and had it again since. I think it probably got worse or returned with the tinnitus/ear problems.

I suspect I have gradual hearing loss AND sudden hearing loss.

 

[Zugzug]

Even if the extended audiometry may supply the reason for my hearing problems (and tinnitus of course), it doesn't change my reality. I can't really think of a drug that would drastically help me, at this moment there is none. I know FX-322 should help me but my situation is too dire for me to survive until then. I've put my life on hold for almost 16 months, with things getting worse. I can't wait another 2-5 years, this amount of time seems like an eternity to me.

I just want you to have as much information as possible before you make a decision.

Unfortunately, this responsibility is on people like us because doctors don't keep up with research. The people on the assisted-suicide forums probably don't keep up with hearing research either.

Know your options and get a variety of perspectives.

 

[FGG]

To @roy1159, Pete is probably not aware of this but Frequency Therapeutics is releasing 90 day Phase 2 data by March 31st (so within 2 weeks, tops). He doesn't frequent the research section, so it's very likely he just doesn't know this.

Regardless, I know the treatment is still a few years away and that seems like a lifetime when each day is a struggle. I can't say what specifically in the future will make that torture worth it, but I do believe there could be lots of time post treatment that would mean more of your life was without suffering than with. This time could be amazing even.

There are some extremely interesting pain drugs in clinical trials, too. Some people are born without the ability to perceive pain due to a mutation in their Nav1.7 receptors and there are now drugs about to start in trials that epigenetically would do the same thing without an effect on motor function. Medicine is finally moving beyond symptom masking. It would be great if you could be around to see it.

Whatever you decide, please accept a very sincere long distance hug.

 

[LilSass]

@PeteJ, it's obvious you are upset, but there is no need to take it out on me or anyone else. I'm sorry for whatever you are going through. Yes, compared to the chronic pain which I experience on a daily basis and the migraines on a weekly basis, the tinnitus is bearable. That doesn't mean it doesn't affect me greatly. Please don't misinterpret what I am saying. The culmination of my health issues has brought me to the brink of suicidal thoughts.

I don't recall mentioning the COVID-19 crisis, only that I had it and it was awful. The scary part is that they don't know what the long term affects might be. People are or who have loved ones that are experiencing lingering symptoms or even death would disagree with you, I'm sure. No fear mongering here - just reality.

 

[Zugzug]

@PeteJ, it's obvious you are upset, but there is no need to take it out on me or anyone else. I'm sorry for whatever you are going through. Yes, compared to the chronic pain which I experience on a daily basis and the migraines on a weekly basis, the tinnitus is bearable. That doesn't mean it doesn't affect me greatly. Please don't misinterpret what I am saying. The culmination of my health issues has brought me to the brink of suicidal thoughts.

I don't recall mentioning the COVID-19 crisis, only that I had it and it was awful. The scary part is that they don't know what the long term affects might be. People are or who have loved ones that are experiencing lingering symptoms or even death would disagree with you, I'm sure. No fear mongering here - just reality.

Don't apologize to him. Over in the COVID-19 thread, he spread propaganda and clicked funny on posts of people dying. The person he was arguing with developed severe COVID-19. He takes the asshole position on everything. He was toxic in the politics thread so a bunch of people placed him on ignore. Then he hopped on over to the COVID-19 thread and was even more toxic. Now he's in the suicidal thread trying to spread misinformation to people who are considering suicide. I really wish it was as simple as just placing him on ignore, but he's trying to influence people who may not have all of the information in front of them.

 

[LilSass]

@Zugzug, thanks for the tip! When I saw some of his other posts I figured that he was just mean spirited, but I'm always willing to give people one chance. I realize how this condition and other health issues can change some people, and then there are those who are just mean regardless. I prefer positivity and support, so thanks for all that you do! Teddy sends you love!

 

[roy1159]

I just want you to have as much information as possible before you make a decision.

Unfortunately, this responsibility is on people like us because doctors don't keep up with research. The people on the assisted-suicide forums probably don't keep up with hearing research either.

Know your options and get a variety of perspectives.

My only missing information is the extent of the damage and the location of it (if going by my symptoms, the extent of the damage is huge), but at this point I can make a calculated guess - IHC and some EHF damage. Everything else was ruled out. The treatment if everything goes as planned is too far considering how dire my situation is. I basically have to choose between being tortured and unable to function properly and killing myself.

To @roy1159, Pete is probably not aware of this but Frequency Therapeutics is releasing 90 day Phase 2 data by March 31st (so within 2 weeks, tops). He doesn't frequent the research section, so it's very likely he just doesn't know this.

Regardless, I know the treatment is still a few years away and that seems like a lifetime when each day is a struggle. I can't say what specifically in the future will make that torture worth it, but I do believe there could be lots of time post treatment that would mean more of your life was without suffering than with. This time could be amazing even.

There are some extremely interesting pain drugs in clinical trials, too. Some people are born without the ability to perceive pain due to a mutation in their Nav1.7 receptors and there are now drugs about to start in trials that epigenetically would do the same thing without an effect on motor function. Medicine is finally moving beyond symptom masking. It would be great if you could be around to see it.

Whatever you decide, please accept a very sincere long distance hug.

Indeed when I'm being tortured daily, a few years seem like a lifetime away. I think I have already made my choice sadly, I've had enough and I'm tired of struggling and being in this state without any help or hope of it changing for the better... I really wish I had other options but as much as I can distort my reality I don't really have a choice. The last 15 months felt like a decade to me, I forfeit at last.

I thank everyone for the support and for contributing to this thread, I was able to pull through the last months by reading similar struggles here, but it might not be enough to go further I'm afraid.

 

[Zugzug]

My only missing information is the extent of the damage and the location of it (if going by my symptoms, the extent of the damage is huge), but at this point I can make a calculated guess - IHC and some EHF damage. Everything else was ruled out. The treatment if everything goes as planned is too far considering how dire my situation is. I basically have to choose between being tortured and unable to function properly and killing myself.

Indeed when I'm being tortured daily, a few years seem like a lifetime away. I think I have already made my choice sadly, I've had enough and I'm tired of struggling and being in this state without any help or hope of it changing for the better... I really wish I had other options but as much as I can distort my reality I don't really have a choice. The last 15 months felt like a decade to me, I forfeit at last.

I thank everyone for the support and for contributing to this thread, I was able to pull through the last months by reading similar struggles here, but it might not be enough to go further I'm afraid.

I'm going to share just one more thing.

My capacity to cope has improved since starting Lexapro. I had tried other antidepressants in the past and they were all train wrecks. I'm still not totally sure what to think, but I can say that I am really surprised at how much better my experience is on Lexapro compared to Cymbalta.

My life is still horrible and I still have suicidal thoughts, but if someone came to me and said that my problems would be cured in 5 years, I would keep going. In the past, my answer to this may have been different.

My point is not that Lexapro, specifically, will change your life. But I do think if it looks like the 5 year medical outlook is solid, you owe it to yourself to cycle through antidepressants, wait for the FX-322 results, and then evaluate again.

As I've said before, you are so young. If you have to mostly start your life at 25, trust me, that is not too late.

I support assisted-suicide and the right to choose, but I really think you could have more strength than you realize if a light is at the end of the tunnel.

 

[RichieTheKid]

Hey Guys, I asked this before but, what are my chances of trying FX-322 if I'm outside the US? Is it possible somehow? What path should I take?

 

[Zugzug]

Hey Guys, I asked this before but, what are my chances of trying FX-322 if I'm outside the US? Is it possible somehow? What path should I take?

If you are referring to Compassionate Use, the outline is that you have to have a rapport with a doctor, they have to contact the drug company (international would be Astellas), and then the doctor also has to submit an application to the "FDA," which by "FDA," I mean whatever the equivalent is in your country.

From Mayo Clinic:
https://www.mayoclinic.org/healthy-...expert-answers/compassionate-use/faq-20058036

Note that, as a community, we still aren't exactly sure how to increase the odds of success. It partially depends on how good the efficacy results are in Phase 2a.

Another avenue, maybe plan B, is to consider flying to the US.

 

[Marin]

There are some extremely interesting pain drugs in clinical trials, too. Some people are born without the ability to perceive pain due to a mutation in their Nav1.7 receptors and there are now drugs about to start in trials that epigenetically would do the same thing without an effect on motor function. Medicine is finally moving beyond symptom masking. It would be great if you could be around to see it.

I recently heard about people with this mutation, and I was never more jealous of another person's condition in my life! I've tried so many pain medications in the last several months, and I can't tolerate any of them. I really, really, really hope it doesn't take a lifetime for drugs like this to become available.

Thank you for sharing this bit of information and hope!

 

[RichieTheKid]

If you are referring to Compassionate Use, the outline is that you have to have a rapport with a doctor, they have to contact the drug company (international would be Astellas), and then the doctor also has to submit an application to the "FDA," which by "FDA," I mean whatever the equivalent is in your country.

From Mayo Clinic:
'https://www.mayoclinic.org/healthy-...expert-answers/compassionate-use/faq-20058036

Note that, as a community, we still aren't exactly sure how to increase the odds of success. It partially depends on how good the efficacy results are in Phase 2a.

Another avenue, maybe plan B, is to consider flying to the US.

Plan B sounds like my best bet

 

[just1morething]

I recently heard about people with this mutation, and I was never more jealous of another person's condition in my life! I've tried so many pain medications in the last several months, and I can't tolerate any of them. I really, really, really hope it doesn't take a lifetime for drugs like this to become available.

Thank you for sharing this bit of information and hope!

Have you tried Lyrica or generic?

 

[Gabriel5050]

I don't understand what is happening to me. I just woke up from sleeping 4 hours and now have a new sound in my left ear. This also happened the night before, when I got a new sound in my right ear. I live in a pretty silent environment.

Do I have to resort to wearing ear muffs 24/7? Do I have to never set a foot outside my home again?

These new sounds are very high pitched and they're intrusive. Will this happen again tomorrow??? How much more worse will it get. Just because I managed until now doesn't mean my ears should keep torturing me even more. I don't know what I'm doing wrong.

How does anyone here manage to sustain themselves in any capacity. Without my parents I'd certainly be homeless and unable to do anything. I sound so pathetic. It's hard to have any hope when tinnitus gets worse. It would be nice to have something good happen once in a while, but no. It's just an endless darkness. No tunnel, no light, no nothing.

 

[serendipity1996]

I recently heard about people with this mutation, and I was never more jealous of another person's condition in my life! I've tried so many pain medications in the last several months, and I can't tolerate any of them. I really, really, really hope it doesn't take a lifetime for drugs like this to become available.

Thank you for sharing this bit of information and hope!

The condition itself, CIP, is a bit of a double-edged sword as many of these people who completely lack this gene have a substantially higher risk of incurring serious or fatal injuries, e.g there was a young Pakistani boy who died after jumping from the roof of his house with some patients even becoming wheelchair bound as their joints are so damaged and even committing suicide because of the impact on their quality of life (e.g this article has more information).

But the prospect of gene therapy being able to repress and 'turn down' this gene without completely eliminating pain (i.e. the necessary kind) would be very exciting.

Just realised how depressing my comment above sounds lol. For real though, I am really excited to see where all this Nav 1.7 research takes us.