Suicidal

[just1morething]

I've tried so many pain medications in the last several months, and I can't tolerate any of them.

Have you tried Lyrica or generic? I have some stinging in my toes that's very uncomfortable. I'm worried Pregabalin will make me feel weird, but it seems to help my tinnitus. Gabapentin is known for making people dumb and dumber. Not sure what Lyrica will do? What if people have to dumb-down to me more than usual? That sounds very disturbing.

 

[roy1159]

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.

I have tried Lexapro for several months but it didn't help either with the brain fog or with the tinnitus severity or hearing problems. My medical problems (tinnitus and hearing the most problematic ones of course) are the root cause of my problems. I know ADs help some people in coping but my situation is too problematic for them to aid me, the best they can do is numb me more which is unnecessary. 5 years is an eternity to me. If there was some help I would gladly try it, but all I can try is different ADs which didn't do shit for me - it's not like I haven't tried enough. I shouldn't even deal with all this crap in my age, the majority here are late 20s to late 60s.

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It sucks that in my last days I can't even do things that I enjoy or waste my money which I worked so hard for in this damn café that ruined my life. The most important lesson I did learn in the past 15 months is that health is paramount and almost everyone takes it for granted until their health is damaged and their quality of life is diminished chronically. How is all this money supposed to help anyone if the problems can't be resolved by profesionals and you can't use the money for enjoyment purposes anyway. I never needed huge sums of money to be able to enjoy my life, I saved the money to start my life the way I wanted to and it ended before I could even start it.

 

[RichieTheKid]

I have tried Lexapro for several months but it didn't help either with the brain fog or with the tinnitus severity or hearing problems. My medical problems (tinnitus and hearing the most problematic ones of course) are the root cause of my problems. I know ADs help some people in coping but my situation is too problematic for them to aid me, the best they can do is numb me more which is unnecessary. 5 years is an eternity to me. If there was some help I would gladly try it, but all I can try is different ADs which didn't do shit for me - it's not like I haven't tried enough. I shouldn't even deal with all this crap in my age, the majority here are late 20s to late 60s.

---------------------------------------------------

It sucks that in my last days I can't even do things that I enjoy or waste my money which I worked so hard for in this damn café that ruined my life. The most important lesson I did learn in the past 15 months is that health is paramount and almost everyone takes it for granted until their health is damaged and their quality of life is diminished chronically. How is all this money supposed to help anyone if the problems can't be resolved by profesionals and you can't use the money for enjoyment purposes anyway. I never needed huge sums of money to be able to enjoy my life, I saved the money to start my life the way I wanted to and it ended before I could even start it.

Hey Roy. Sorry to hear you're having a hard time. Just so you know you're not alone in the age thing, my issues started at 16 and even intensified at age 25 and I'm only 26. I tend not to worry about the future anymore because I won't survive if I do. I too have days that absolutely crush my soul. No joke about that. I feel like an absolute survivor.

On top of my health I also deal with terrible anxiety and and depression at times, due to a VERY tumultuous family life... which is so much stress on my already stressed mind and body, I very literally go insane at times. One who has literally changed their brain chemistry just for pure survival.

I know you may feel differently but... If there's one thing I too dream of it's stem cells and regenerative medicine coming to the fore front. I really believe it may not cure me, but can possibly help me. I can't think of the negative outcome. If I do I'll be paralyzed with fear and doubt. I have to say this will help me no matter what, so survive.

I know its not a way to live but over time I realized, everyone else with their health and strength is not going to slow down for me, I'm not that important to the world on a grand scale, but I am important definitely, it took a long time to know my self worth even in my ill state. So I realized this is my life now. Sometimes I feel my heart pain from the time before I was ill, my past self, but, If I stop to think about it it sucks me back into the vortex of pain. This is what surviving has become like.

You may view this as inhumane and no way to live, but even for the smallest chance of hope, I must do what it takes. SO, I don't know I can't tell you what to do, but I hope you at least consider my words.

 

[Marin]

Have you tried Lyrica or generic? I have some stinging in my toes that's very uncomfortable. I'm worried Pregabalin will make me feel weird, but it seems to help my tinnitus. Gabapentin is known for making people dumb and dumber. Not sure what Lyrica will do? What if people have to dumb-down to me more than usual? That sounds very disturbing.

Yeah, I have tried Lyrica and Gabapentin. Both made me feel extra dumb on top of the hyperacusis induced brain fog that I already have. They both also made my hands burn and swell.

Gabapentin seemed to help a bit with the pain the first couple of days, but then quickly stopped. If I upped my dose I got pain relief for another day or two until it stopped again. It also made me SO depressed (as if I wasn't depressed enough) so I decided to stop trying to up my dose to chase the relief. I've read about other people having similar issues with Gabapentin.

Lyrica seemed to provide relief the first few days, then it started making my tinnitus and the loudness part of my hyperacusis worse. It felt like my entire head was electric and that was extremely uncomfortable.

I have read several accounts of Lyrica helping others with pain hyperacusis or other neuropathies so don't let my bad experience stop you. I'm very unlucky with meds.

Oh, and I forgot to add that my "Exploding Head" syndrome that I get when falling asleep got really bad when taking Lyrica and then Gabapentin. It felt like my ears were shocking and electrocuting my brain as I fell asleep. It was extremely painful, and I've read that these can actually be mini seizures possibly caused by neurotransmitter imbalances. I'm guessing these medications messed up my GABA/Glutamate balance? It's gotten a little better since stopping the meds, but it's still a problem. Just another symptom to add to my long list of things that cause me pain. Falling asleep!

 

[Marin]

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.

Oh yeah, now that you mention it I remember reading about those people having their own struggles because of it, and I can see how not having any pain could be very bad especially for a child. All very good points!

However, in my current chronic pain and housebound state I'd still happily trade conditions so I could go outside, laugh with my kids again, and do all of the little things that I took for granted that I now miss terribly. Then again, I also fantasize about having just about any other disease instead of hyperacusis because of how severely limited my life has become. Sometimes even silently swiping on my phone makes my ear pain worse. It's quite a sad state to be in!

 

[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.

So I managed to sleep 7.5 to 8 hours last night and my tinnitus is not better... but it's also not worse again for no reason. So maybe if I wait more my left ear which had the last worsening will go down again, I hope...

This sucks.

 

[PeteJ]

I have tried Lexapro for several months but it didn't help either with the brain fog or with the tinnitus severity or hearing problems. My medical problems (tinnitus and hearing the most problematic ones of course) are the root cause of my problems. I know ADs help some people in coping but my situation is too problematic for them to aid me, the best they can do is numb me more which is unnecessary. 5 years is an eternity to me. If there was some help I would gladly try it, but all I can try is different ADs which didn't do shit for me - it's not like I haven't tried enough. I shouldn't even deal with all this crap in my age, the majority here are late 20s to late 60s.

---------------------------------------------------

It sucks that in my last days I can't even do things that I enjoy or waste my money which I worked so hard for in this damn café that ruined my life. The most important lesson I did learn in the past 15 months is that health is paramount and almost everyone takes it for granted until their health is damaged and their quality of life is diminished chronically. How is all this money supposed to help anyone if the problems can't be resolved by profesionals and you can't use the money for enjoyment purposes anyway. I never needed huge sums of money to be able to enjoy my life, I saved the money to start my life the way I wanted to and it ended before I could even start it.

Unfortunately, there's no drug or physical treatment that lowers tinnitus which is what's needed.

I hear ya about people who take their health for granted. People who are reckless with their health, who don't have tinnitus or at least, don't have severe tinnitus, don't realize how lucky and fortunate they are.

 

[PeteJ]

Have you tried Lyrica or generic? I have some stinging in my toes that's very uncomfortable. I'm worried Pregabalin will make me feel weird, but it seems to help my tinnitus. Gabapentin is known for making people dumb and dumber. Not sure what Lyrica will do? What if people have to dumb-down to me more than usual? That sounds very disturbing.

Have you and Marin considered natural remedies?

I don't know what pharmaceuticals you have tried, but if nothing has helped, you could try something natural.

I want to try CBD oil and plan to get one. I need to research what seems to work for many people because there's so many out there now (since my country became involved in regulating it).

 

[AliasM]

I told a friend I was having suicidal ideation and didn't want to live with tinnitus & hyperacusis. I said I was not going to do anything though. It was just incredibly hard to live with and I would quite frankly rather be dead. It's true, and I trusted her enough to tell her. Yesterday she tried to call me a few times, then text. I was in an appointment so didn't take the calls, then was busy so didn't respond to the text. I thought I will text her back after dinner and kids are in bed. In the afternoon around 3pm I got a call from police doing a welfare check, making sure I am ok. Friend called police to check on me because I wasn't returning calls or text.

I am so angry at her. I often get back to her and others later, or next day... even a few days later. This is not unusual for me, and normal behaviour for most people, yes? I am busy, I have 4 kids, and I am unwell too. I don't feel like chatting to people and I have withdrawn from friends. T and H rule my life. I've also told her before that I don't answer my phone often now because of the hyperacusis. She isn't special. I meant her calls too.

I just can't tell you how angry I am that she contacted police and I am trying to think up the words to tell her how mad I am and to not ever do that again. I do not care one bit that she was concerned for me. It was a total over reaction. When the officer identified himself I panicked. I thought something had happened to one of my family. Then I couldn't hear him properly because I have to hold the phone to my cheek, not my ear because of the pain. So then I call out for my 15-year-old son to come and talk to the cop for me because I can't hear properly. It was a nightmare and I am so angry.

On a brighter note, I woke with lower tinnitus today. This is rare and I felt relief for the first time in a long time. I ate lunch around 1pm (big mistake eating which is why I don't do too much of that these days) and that escalated tinnitus a lot. I am now back to 9/10 and it's just after 9pm. Tinnitus is all over my brain, especially at the top, and I can feel all my neurons going off. It is also giving me a headache.

Does brain tinnitus give other people headaches? The intense tinnitus definitely came first, headache hours later. It is not a pain headache but pressure, and if I press my scalp I get a strange sensation. I am so sick of this shit.

When do things start to settle down? I'm 3 months in.

 

[PeteJ]

I told a friend I was having suicidal ideation and didn't want to live with tinnitus & hyperacusis. I said I was not going to do anything though. It was just incredibly hard to live with and I would quite frankly rather be dead. It's true, and I trusted her enough to tell her. Yesterday she tried to call me a few times, then text. I was in an appointment so didn't take the calls, then was busy so didn't respond to the text. I thought I will text her back after dinner and kids are in bed. In the afternoon around 3pm I got a call from police doing a welfare check, making sure I am ok. Friend called police to check on me because I wasn't returning calls or text.

I am so angry at her. I often get back to her and others later, or next day... even a few days later. This is not unusual for me, and normal behaviour for most people, yes? I am busy, I have 4 kids, and I am unwell too. I don't feel like chatting to people and I have withdrawn from friends. T and H rule my life. I've also told her before that I don't answer my phone often now because of the hyperacusis. She isn't special. I meant her calls too.

I just can't tell you how angry I am that she contacted police and I am trying to think up the words to tell her how mad I am and to not ever do that again. I do not care one bit that she was concerned for me. It was a total over reaction. When the officer identified himself I panicked. I thought something had happened to one of my family. Then I couldn't hear him properly because I have to hold the phone to my cheek, not my ear because of the pain. So then I call out for my 15-year-old son to come and talk to the cop for me because I can't hear properly. It was a nightmare and I am so angry.

On a brighter note, I woke with lower tinnitus today. This is rare and I felt relief for the first time in a long time. I ate lunch around 1pm (big mistake eating which is why I don't do too much of that these days) and that escalated tinnitus a lot. I am now back to 9/10 and it's just after 9pm. Tinnitus is all over my brain, especially at the top, and I can feel all my neurons going off. It is also giving me a headache.

Does brain tinnitus give other people headaches? The intense tinnitus definitely came first, headache hours later. It is not a pain headache but pressure, and if I press my scalp I get a strange sensation. I am so sick of this shit.

When do things start to settle down? I'm 3 months in.

Your friend did what she thought was right. She's concerned about you and wants to help. The majority of people don't understand the idea of people with tinnitus/hyperacusis being so bad that it contributes to thoughts of suicide or suicide ideation. Heck, most people don't understand why people would want to off themselves (for any reason) but when the condition is invisible, they really don't understand. I wouldn't judge your friend too harshly. She just doesn't understand and is just acting in a way that society has conditioned her.

I also have headaches but never considered that tinnitus itself (or directly) is contributing to them. I know I am constantly stressed, anxious and depressed so I thought that was a factor. I also struggle to sleep and get sufficient hours every night. I also suffered from migraines and headaches before I got chronic tinnitus.

But, now that you mention it, tinnitus does have a brain element to it so I should consider it could be directly related. Either way, I don't know how that could be treated since the t is always there. :-(

The lower tinnitus is known as fluctuation. You are very fortunate to have some changes in your tinnitus. Mine doesn't fluctuate much anymore. Well, it still spikes or becomes "busier" with the perception of more tones. It's difficult to explain. Pure hell.

 

[roy1159]

I hear ya about people who take their health for granted. People who are reckless with their health, who don't have tinnitus or at least, don't have severe tinnitus, don't realize how lucky and fortunate they are.

That's the most frustrating thing about it all. Before I got tinnitus I always avoided loud noise and loud places, always wondered how people on the bus listen to dangerous noise levels via their headphones. I did use overhead headphones during my teens but never loud enough to cause damage. Also to concentrate really well on my studies, I needed a quiet environment, so i can now forget about ever going to academics with severe tinnitus. All around us we see people reckless with their hearing - I remember several months ago I saw a middle aged man in the car BLASTING music, it was probably 90 dB or louder in his car, you bet he doesn't have tinnitus otherwise he wouldn't be so stupid with noise lol. Young people that visit loud clubs every weekend - in my country there is little to none inspection regarding loudness level in clubs and other loud places - it can reach over 100 dB in a typical nightclub, which I rarely visited because I preferred quieter places to hang out.

I kinda blame myself for the tinnitus onset... I didn't know that working in a café for a couple of years would cause so much damage that would ultimately end my health and life. I can't prove it's from working there but it was my only noise exposure at the time. Also my audiogram doesn't add up with my hearing problems that are severe and with the severity of tinnitus, I guess it comes down to me being unlucky... a roll of the dice.

 

[AliasM]

Your friend did what she thought was right. She's concerned about you and wants to help. The majority of people don't understand the idea of people with tinnitus/hyperacusis being so bad that it contributes to thoughts of suicide or suicide ideation. Heck, most people don't understand why people would want to off themselves (for any reason) but when the condition is invisible, they really don't understand. I wouldn't judge your friend too harshly. She just doesn't understand and is just acting in a way that society has conditioned her.

I also have headaches but never considered that tinnitus itself (or directly) is contributing to them. I know I am constantly stressed, anxious and depressed so I thought that was a factor. I also struggle to sleep and get sufficient hours every night. I also suffered from migraines and headaches before I got chronic tinnitus.

But, now that you mention it, tinnitus does have a brain element to it so I should consider it could be directly related. Either way, I don't know how that could be treated since the t is always there. :-(

The lower tinnitus is known as fluctuation. You are very fortunate to have some changes in your tinnitus. Mine doesn't fluctuate much anymore. Well, it still spikes or becomes "busier" with the perception of more tones. It's difficult to explain. Pure hell.

Thanks Pete. I am still going to have to remind her that I no longer speak on the phone, and in all the years I have known her, I rarely ever respond to texts straight away. I also want her to know that if I did ever do anything to myself, it would be to end my suffering and I am glad she is not in a position to fathom how death may come as such a relief to some. That is her privilege. I couldn't have imagined it some time ago. The healthy are so selfish for expecting people to suffer for THEIR comfort.

I hope these fluctuations come more often. My tinnitus fluctuates in the sense that I never know what I will wake up with e.g., solid tone ring, hiss, crackle, chirp, pulse, static, glass shattering, or a combination of many or all, but the volume fluctuation... well I have never given myself a 3/10 before and it was amazing. I took a shower and couldn't hear it. I could hear it over everything else but to just shower in peace was divine. I can see how people habituate to that kind of tinnitus. I still didn't like it, and it was still annoying and loud-ish, but I could see myself eventually rejoining society.

Cannot habituate to my regular tinnitus. It's hell. I hope I get more of those fluctuations.

 

[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.

It seems that Frequency Therapeutics has a disclaimer on their site saying the only way to try the drug is through clinical trials and there's not enough data for expanded access.

 

[FGG]

It seems that Frequency Therapeutics has a disclaimer on their site saying the only way to try the drug is through clinical trials and there's not enough data for expanded access.

Yep. But they also said on the Tinnitus Talk Podcast that they would be open to revisiting that after Phase 2. The Phase 2 90-day results are this week and the full results are by April/May.

 

[Chinmoku]

Also my audiogram doesn't add up with my hearing problems that are severe and with the severity of tinnitus, I guess it comes down to me being unlucky... roll off the dice.

The genetic lottery. I hate it. I am similar, never did anything bad with my ears then boom, a stupid cold, an ear infection with a presumed virus and I go from a hard working individual with a successful career and father of two kids to a tortured wreck who fights every day to add one more day to his life because my kids need me.
After many years of hard work I wanted to finally relax and enjoy raising my children, and a stupid cold does this, with possible complications from medications making things worse.

I feel for you and the younger people who have been cut short early in life due to genetic bad luck. Evolution has failed us big time here.

In the meantime many people expose themselves to loads of risk factors and don't even get mild tinnitus.

I really hope FX-322 becomes available soon, end of March we get Phase 2a results, and if they are good also for tinnitus we need to get active in obtaining compassionate use. Our objective should be at least to bring the pain down to a level that makes daily life bearable, because in the following years a cascade of treatments will become available and things could get better and better. Our problem is surviving torture day by day until FX-322 can be finally administered. If tinnitus improves there should be a positive effect on other conditions too as repairing the brain noise filters would allow the brain to rest and relax a little. It's our only hope.

 

[PeteJ]

That's the most frustrating thing about it all. Before I got tinnitus I always avoided loud noise and loud places, always wondered how people on the bus listen to dangerous noise levels via their headphones. I did use overhead headphones during my teens but never loud enough to cause damage. Also to concentrate really well on my studies, I needed a quiet environment, so i can now forget about ever going to academics with severe tinnitus. All around us we see people reckless with their hearing - I remember several months ago I saw a middle aged man in the car BLASTING music, it was probably 90 dB or louder in his car, you bet he doesn't have tinnitus otherwise he wouldn't be so stupid with noise lol. Young people that visit loud clubs every weekend - in my country there is little to none inspection regarding loudness level in clubs and other loud places - it can reach over 100 dB in a typical nightclub, which I rarely visited because I preferred quieter places to hang out.

I kinda blame myself for the tinnitus onset... I didn't know that working in a café for a couple of years would cause so much damage that would ultimately end my health and life. I can't prove it's from working there but it was my only noise exposure at the time. Also my audiogram doesn't add up with my hearing problems that are severe and with the severity of tinnitus, I guess it comes down to me being unlucky... a roll of the dice.

I didn't avoid loud places as much as I should have but I didn't seek them out. I was told about relatives who know people who went to concerts and nothing happened to them meaning they don't have tinnitus despite exposing themselves to loud events and situations.

I think you are exactly right, it's a roll of the dice but I would add, maybe it's also partly genetics. Some people are fortunate to have more resistant inner ears.

 

[roy1159]

The genetic lottery. I hate it. I am similar, never did anything bad with my ears then boom, a stupid cold, an ear infection with a presumed virus and I go from a hard working individual with a successful career and father of two kids to a tortured wreck who fights every day to add one more day to his life because my kids need me.
After many years of hard work I wanted to finally relax and enjoy raising my children, and a stupid cold does this, with possible complications from medications making things worse.

I feel for you and the younger people who have been cut short early in life due to genetic bad luck. Evolution has failed us big time here.

In the meantime many people expose themselves to loads of risk factors and don't even get mild tinnitus.

I really hope FX-322 becomes available soon, end of March we get Phase 2a results, and if they are good also for tinnitus we need to get active in obtaining compassionate use. Our objective should be at least to bring the pain down to a level that makes daily life bearable, because in the following years a cascade of treatments will become available and things could get better and better. Our problem is surviving torture day by day until FX-322 can be finally administered. If tinnitus improves there should be a positive effect on other conditions too as repairing the brain noise filters would allow the brain to rest and relax a little. It's our only hope.

I feel the same regarding losing the abillity to ever be productive anymore... I don't have anyone depending on me and I can imagine it being impossible to go through daily life with a family that needs you. It's inhumane to suffer like this every second of our lives when everything just stays the same and we have no hope of it getting better until the arrival of treatments. I can't think about future treatments when I know I can barely hold on daily - even if the future treatments seem promising. It's sad to even write it let alone go through it but I feel I've given up on life several months ago, from then on I just cruised through on autopilot. My life doesn't have a meaning or a purpose anymore. As far as I'm concerned I did everything right, and if that's not enough than that's fine - I accepted that my life is over already. I probably won't make it but I tried and still am trying.

 

[PeteJ]

Thanks Pete. I am still going to have to remind her that I no longer speak on the phone, and in all the years I have known her, I rarely ever respond to texts straight away. I also want her to know that if I did ever do anything to myself, it would be to end my suffering and I am glad she is not in a position to fathom how death may come as such a relief to some. That is her privilege. I couldn't have imagined it some time ago. The healthy are so selfish for expecting people to suffer for THEIR comfort.

I hope these fluctuations come more often. My tinnitus fluctuates in the sense that I never know what I will wake up with e.g., solid tone ring, hiss, crackle, chirp, pulse, static, glass shattering, or a combination of many or all, but the volume fluctuation... well I have never given myself a 3/10 before and it was amazing. I took a shower and couldn't hear it. I could hear it over everything else but to just shower in peace was divine. I can see how people habituate to that kind of tinnitus. I still didn't like it, and it was still annoying and loud-ish, but I could see myself eventually rejoining society.

Cannot habituate to my regular tinnitus. It's hell. I hope I get more of those fluctuations.

I miss my fluctuations.

My tinnitus worsened over time. I have constant buzzing and ringing tones. Occasionally, certain sounds or noises cause ear pain but the tinnitus is the worst. It's always loud, I rate it between 9 and 10/10... I perceive it worse in my right ear and throughout my brain but it's so loud, it's difficult to pinpoint exactly "where it's coming from" but it can't be masked. However, I like to be outside with noises from nature like moving rivers, ducks, birds etc. and the more distractions the better, but the tinnitus is always there. Nothing helps but I hope Frequency Therapeutics, hearing regeneration and any other real treatment potential comes to fruition really soon - same as anyone here.

 

[Marin]

Have you and Marin considered natural remedies?

I don't know what pharmaceuticals you have tried, but if nothing has helped, you could try something natural.

I want to try CBD oil and plan to get one. I need to research what seems to work for many people because there's so many out there now (since my country became involved in regulating it).

Yes, I feel like I've tried ALLLLLLLL the supplements and they either make my ear pain worse or give me other bad side effects. The last one I tried was Astaxanthin, and that changed my burning pain to a horrible burning itch that can start in my ears and spread all over my head. WTF?!

I do actually take CDB (no THC) daily, and I have found it to be helpful for both sleep and some of the minor ear aches and pains. My pain is quite severe, though. While CBD does help, it's just still not enough pain relief. It's kind of like trying to using a squirt gun to put out a bonfire, lol.

I have also tried many of the medications mentioned on this site with no success (except for benzos, those help but would prefer to take something else for obvious reasons). I keep a running list of medications and treatments worth trying and just keep working my way through them one by one.

 

[LilSass]

@Marin, Kava Kava & Kratom are natural painkillers and also have the benefit of lifting your spirits. Can be bought online.

 

[Zugzug]

@Marin, Kava Kava & Kratom are natural painkillers and also have the benefit of lifting your spirits. Can be bought online.

I'm curious. Do you find Kava Kava to have similar benefits to benzos?

 

[GBB]

I'm curious. Do you find Kava Kava to have similar benefits to benzos?

I do, it dilutes my tinnitus noise but I need to cycle it on/off as I can build up tolerance, and it's maybe 20% as effective as Xanax.

 

[roy1159]

I feel like I'm going insane from not understanding speech. Not only the fact that nothing that can be measured in tests explains it, but what did I fucking do to make my hearing that worse?

I worked with earplugs and then was in my silent room at home. Audiogram was even better than the first one that was done when hearing was normal. How can you go from normal hearing to not understanding what people are saying and instead hearing whistles in apparently a day?!?!? Elderly people seem to understand speech better than me.

At least so I could have some answers as to why that is, but no — that's too much to ask. Coupled with severe tinnitus I just can't fathom how am I supposed to go on with this. Can't hold a job, can't go to university like I was supposed to.

Then for what am suffering? For the prospect of maybe diminishing the suffering a bit in 5 years?!?!

I won't ever live like people my age, like a normal young person that should conquer the world instead of dealing with medical problems that don't even have a treatment let alone a cure. I don't even get sympathy from my surroundings, they even blame me for not living life. Yeah like i'm choosing to be in that state. They will never understand.

I don't even know why im writing this, as I already made my choice.

 

[Zugzug]

I feel like I'm going insane from not understanding speech. Not only the fact that nothing that can be measured in tests explains it, but what did I fucking do to make my hearing that worse?

I worked with earplugs and then was in my silent room at home. Audiogram was even better than the first one that was done when hearing was normal. How can you go from normal hearing to not understanding what people are saying and instead hearing whistles in apparently a day?!?!? Elderly people seem to understand speech better than me.

At least so I could have some answers as to why that is, but no — that's too much to ask. Coupled with severe tinnitus I just can't fathom how am I supposed to go on with this. Can't hold a job, can't go to university like I was supposed to.

Then for what am suffering? For the prospect of maybe diminishing the suffering a bit in 5 years?!?!

I won't ever live like people my age, like a normal young person that should conquer the world instead of dealing with medical problems that don't even have a treatment let alone a cure. I don't even get sympathy from my surroundings, they even blame me for not living life. Yeah like i'm choosing to be in that state. They will never understand.

I don't even know why im writing this, as I already made my choice.

So if I understand correctly, it literally came on severely in one day? Both the tinnitus and speech issues? Is it bilateral? Symmetric? I fully believe you, it's just so unfortunate that you can't pinpoint a cause.

I find it curious that noise in a cafe would cause it. I realize people have different genetic tendencies, but would a standard day at the cafe with earplugs break you like this? I would think it would be more gradual. I do know that hearing damage is cumulative and there is some element of the straw that broke the camel's back, but that's just so extreme from something that's not that bad.

Please don't blame yourself. There's absolutely nothing about this that would point to it being your fault. Have you had your extended audiogram yet?

 

[__nico__]

Everything for my death with dignity is planned and will be done sometime this April. I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless. Going to spend my last days away from the site. Farewell.

 

[Backpacker]

I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless

Can you tell me where you are going to visit a neurotologist? Don't get me wrong, I'm not telling you who to see. I just want you to visit a good neurotologist. I don't know in what state the neurotologist you are planning to see is. If you don't mind, can you tell me? I would like you to get the opinion of the most experienced because your situation seems to be specific.

 

[AliasM]

Everything for my death with dignity is planned and will be done sometime this April. I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless. Going to spend my last days away from the site. Farewell.

I don't know what to say Nico but please just keep reaching out. We get it. We are all suffering.

 

[__nico__]

Can you tell me where you are going to visit a neurotologist? Don't get me wrong, I'm not telling you who to see. I just want you to visit a good neurotologist. I don't know in what state the neurotologist you are planning to see is. If you don't mind, can you tell me? I would like you to get the opinion of the most experienced because your situation seems to be specific.

Dr. Robert Yawn in Memphis Tennessee.

 

[Dirtworks]

Isn't there something that can be done for someone who just can't take it anymore? Can they not do something to the auditory cortex part of the brain? Obviously terrible to lose your hearing but in some cases wouldn't it be better than severe tinnitus? Could balance still be maintained?

Please, don't anyone take their life. Get to a psychiatric hospital if you are considering it. There must be medications to sedate us enough that it's tolerable. Having to be medicated is better than the alternative. Plus there is always hope for a cure.

 

[Kriszti]

Everything for my death with dignity is planned and will be done sometime this April. I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless. Going to spend my last days away from the site. Farewell.

Nico, I know it's not much, but I'm truly sorry that your health failed you. This is just not fair, none of the suffering you have to endure.

I hope that there is a way back and the neurotoligist you're visiting will be of help. You mentioned you are dealing with other health concerns. Did you exhaust all treatment options regarding that?