Suicidal

[pleasejuststop]

Pegasos is out of the question. Without my parents' cooperation it will be a waste of money, stupid for Pegasos to demand it as I'm an adult, but whatever.

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

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

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

But I made peace with my reality months ago.

At this point i sound like a broken record.. i guess it will continue to be like this until i finally have the courage to be done with this life, as things won't get better.. they haven't for over a year. Hearing and ear issues can really be enigmatic in some cases.

Do you know how much Pegasos costs? Probably a waste of time for me anyway.

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

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

 

[roy1159]

Do you know how much Pegasos costs? Probably a waste of time for me anyway.

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

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

Hey man, I'm 21 as well.

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

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

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

 

[Zugzug]

Hey man, I'm 21 as well.

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

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

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

Hey, @roy1159, just clutching at straws here. I wonder if you have been worked up for autoimmune diseases.

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

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

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

 

[GBB]

Welp I'm back here again - bad week culminating in bad day. When you have too many bad days in a row it seems very logical to ask what the point in persisting is. This is such a perversion of life.

 

[FGG]

Welp I'm back here again - bad week culminating in bad day. When you have too many bad days in a row it seems very logical to ask what the point in persisting is. This is such a perversion of life.

Because you have a lot of gifts that future you might be able to use to have a good life? And you are still acute enough to see a lot of decrease in severity even on its own.

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

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

 

[GBB]

Because you have a lot of gifts that future you might be able to use to have a good life? And you are still acute enough to see a lot of decrease in severity even on its own.

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

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

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

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

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

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

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

 

[Diesel]

I was never a person to experience anxiety before getting tinnitus and hyperacusis. In fact, just like tinnitus and hyperacusis, I didn't really understand what anxiety meant. Obviously now I do.

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

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

 

[GBB]

I was never a person to experience anxiety before getting tinnitus and hyperacusis. In fact, just like tinnitus and hyperacusis, I didn't really understand what anxiety meant. Obviously now I do.

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

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

This 100% - everything from running the washing machine adjacent to my bedroom, to should I try to shower with earplugs or run a bath, to okay how long can I use my space heater to warm up my room before the fan noise spikes me. It's gotta be neuropathic - why don't these god damn nerves heal up, and how the hell did I obliterate them to smitherines but I can still hear most things fine? *Sigh*

The longer this persists it makes me think maybe all of us have some viral cofactor - we didn't serve in Iraq with things exploding left and right - there must be a common weak link for normal stuff to get us to where we are.

 

[serendipity1996]

I was never a person to experience anxiety before getting tinnitus and hyperacusis. In fact, just like tinnitus and hyperacusis, I didn't really understand what anxiety meant. Obviously now I do.

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

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

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

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

 

[GBB]

Hey man, I'm 21 as well.

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

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

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

Would you consider stem cells in Asia? If you are at the point of death maybe it's not a bad consideration. I do have a list of things I refuse to off myself without trying first - some sort of stem cell therapy like SC21 in Thailand is on my list.

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

 

[Hazel]

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

We've literally been wanting to do this for years. But it's not a simple endeavor. Of course, we already have conducted several large-scale surveys (n>5,000) and have shared that data with academia. But what is missing, as you point out, is the longitudinal data.

There are a number of challenges:

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

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

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

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

 

[GBB]

We've literally been wanting to do this for years. But it's not a simple endeavor. Of course, we already have conducted several large-scale surveys (n>5,000) and have shared that data with academia. But what is missing, as you point out, is the longitudinal data.

There are a number of challenges:

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

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

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

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

Fully understood - you guys do an amazing amount already. My comment wasn't meant as a, why aren't these staff doing more work! More of a, ideally I wish we could do it like this. Missed opportunity wasn't meant as mis-execution, just an if we had the resources, what a wonderful thing this could be.

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

 

[Lukee]

This 100% - everything from running the washing machine adjacent to my bedroom, to should I try to shower with earplugs or run a bath, to okay how long can I use my space heater to warm up my room before the fan noise spikes me. It's gotta be neuropathic - why don't these god damn nerves heal up, and how the hell did I obliterate them to smitherines but I can still hear most things fine? *Sigh*

The longer this persists it makes me think maybe all of us have some viral cofactor - we didn't serve in Iraq with things exploding left and right - there must be a common weak link for normal stuff to get us to where we are.

There is discussion on a "tinnitus gene" which may predispose some people to tinnitus easier than others.

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

 

[GBB]

There is discussion on a "tinnitus gene" which may predispose some people to tinnitus easier than others.

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

Thanks - LDN is on my list but I have no neuropathy in my arms - I believe that is another poster.

 

[Sayeed]

We've literally been wanting to do this for years. But it's not a simple endeavor. Of course, we already have conducted several large-scale surveys (n>5,000) and have shared that data with academia. But what is missing, as you point out, is the longitudinal data.

There are a number of challenges:

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

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

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

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

God bless you for putting your time and efforts into this. I sincerely appreciate it.

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

 

[Lukee]

Thanks - LDN is on my list but I have no neuropathy in my arms - I believe that is another poster.

Sorry that was meant for @roy1159.

But try out that LDN!

 

[Autumnwillows]

This demon has slowly been killing me and as of now it's nearly won.
I've lost everything trying to fight it and it's only become worse.

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

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

The advice I need is:

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

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

Plus, I asked for Melatonin.

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

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

Mia

 

[livewire77]

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

Zopiclone IS OK. I have used it daily for 4 months. Some people have used it for years.



Interesting report here:

An approach to long-term sedative-hypnotic use

Forums are full of prophets of doom spreading pharmacophobia. People with positive experiences usually don´t even have motivation to visit them. If you live in country where some Orexin blocker is available, you can also try it. If you live in EU, then it hopefully will be approved by EMA next year. But it will be pretty expensive if not reimbursed.

 

[Autumnwillows]

@livewire77, thank you.

I have a crippling fear of taking anything and waking up worse for it, but my ears rip me from sleep each night now, and it's always been worse if I can't sleep.

 

[Sayeed]

@livewire77, thank you.

I have a crippling fear of taking anything and waking up worse for it, but my ears rip me from sleep each night now, and it's always been worse if I can't sleep.

Hi Autumn, don't give up hope...

Try a mixture of gabapentin and kalanopin. Melatonin you shouldn't need a prescription for.

Give it some time. You are going through a tough phase but it doesn't mean it will last forever. Things will get better. The previous poster is right; usually the people that got better or are able to cope with it better won't post online as they have moved on.

 

[Autumnwillows]

Thank you @Sayeed, I wish I could keep fighting. It makes me shake with anxiety and I'm controlled by my fear of noise making it worse.

Unfortunately, I believe in the UK I will need a prescription; that's if the docter ever gets back to me lol. Nothing worse than feeling like this and then being ignored by the 'support' systems you're supposed to be able to access. I haven't done much research on gabapentin but will have a look as been looking at the other one.

I'll make sure everyone knows why I died though, not depression not anxiety that drove me, but tinnitus. I've lost my family, job, friends, freedom and future, the least I can do is get some story in the local paper for five minutes to raise awareness.

 

[roy1159]

As I look back now, my tinnitus and hearing problems onset started a chain of events that caused my physical health and my life in general to fall apart so bad that I don't think I can come back from it. Although it's been only 16 months with all these problems, it feels like all I know in life is pain, suffering, cognitive and physical dysfunction, helplessness and frustration. All I do is deal with these problems trying to mend them but nothing seems to work. At this point I think I'm cursed, or my life is. Every time I see people my age or just healthy people in general I get more depressed than I already am, I can't be dysfunctional like this for so long at ******* 21 years old. It's not fair of course but it is what it is, I'm left dealing with pain and dysfunction 24/7 or to off myself like an animal.

Why am I such a coward and can't do it already... I'm tired of ranting like this or suffering.

 

[Diesel]

The longer this persists it makes me think maybe all of us have some viral cofactor - we didn't serve in Iraq with things exploding left and right - there must be a common weak link for normal stuff to get us to where we are.

Considering my own situation, I point to mostly shit genes and youth ignorance. Once my family learned I had tinnitus, it was only then my parents revealed they both did, and most of their siblings had hearing loss. As for ignorance, I lived a loud loud 20s, and didn't think much about hearing protection all the time, in particular for the hundreds live shows I attended.

 

[GBB]

Thank you @Sayeed, I wish I could keep fighting. It makes me shake with anxiety and I'm controlled by my fear of noise making it worse.

Unfortunately, I believe in the UK I will need a prescription; that's if the docter ever gets back to me lol. Nothing worse than feeling like this and then being ignored by the 'support' systems you're supposed to be able to access. I haven't done much research on gabapentin but will have a look as been looking at the other one.

I'll make sure everyone knows why I died though, not depression not anxiety that drove me, but tinnitus. I've lost my family, job, friends, freedom and future, the least I can do is get some story in the local paper for five minutes to raise awareness.

I second trying out some of the more aggressive approaches before you do anything irreversible. If it's really down to that, you should consider Gabapentin and Clonazepam (see linked study showing efficacy).

GABAA-benzodiazepine-chloride receptor-targeted therapy for tinnitus control: preliminary report

 

[Sayeed]

I second trying out some of the more aggressive approaches before you do anything irreversible. If it's really down to that, you should consider Gabapentin and Clonazepam (see linked study showing efficacy).

GABAA-benzodiazepine-chloride receptor-targeted therapy for tinnitus control: preliminary report

The only issue I have with Klonopin is that it's addictive and recommended for short time use. Otherwise I would be all over it. I hope Buspar and Gabapentin do the trick for me but I feel Klonopin is on the horizon for me due to panic attacks.

But what do we got to lose.

 

[Autumnwillows]

Thank you @GBB. I will have a read, currently reading the Clonazepam post. I've been prescribed it before but was too scared back then.

Yes @Sayeed, I've got nothing left to lose, I also suffer with CFS so find each day such a battle, it's all quite heart breaking to get to this point.

 

[TrevorSanders]

Thank you @GBB. I will have a read, currently reading the Clonazepam post. I've been prescribed it before but was too scared back then.

Yes @Sayeed, I've got nothing left to lose, I also suffer with CFS so find each day such a battle, it's all quite heart breaking to get to this point.

Personally, Clonazepam reduces my tinnitus to basically nothing for around 4-5 hours. It's quite addictive but, when taken moderately (once or twice a week), shouldn't have you develop an addiction.

 

[Chinmoku]

Personally, Clonazepam reduces my tinnitus to basically nothing for around 4-5 hours. It's quite addictive but, when taken moderately (once or twice a week), shouldn't have you develop an addiction.

@TrevorSanders, may I ask what dosage stops your tinnitus for 4-5 hours?

@Autumnwillows, so sorry to hear about your torturing condition, and similarly for everyone else in this thread. I feel like you a lot. I have two kids so I need to stay here but it's proving a minute by minute torture. Anyway I wanted to say that you might try Clonazepam to see what happens, if you are one step from the abyss then there is little to lose in trying it, in combination with Gabapentin (there is a thread about it). It is important to understand quickly whether it is helping you or not, so the reaction to the first dose is important. If you check the thread I linked above you may find some cases where regular daily intake of Clonazepam didn't help long term and made things worse, but if you take it weekly only to get some breaks or reliefs you might avoid addiction and it might help you survive until hopefully your tinnitus gets better. Mine only got worse since inception but we never know, the trend might revert.

I hope you find something that keeps you going, for you and your family. In any case there are many people for whom Clonazepam (plus Gabapentin) works, so perhaps you may consider this if you are standing on the abyss ready to jump.

 

[Lukee]

Thank you @GBB. I will have a read, currently reading the Clonazepam post. I've been prescribed it before but was too scared back then.

I also suffer with CFS so find each day such a battle, it's all quite heart breaking to get to this point.

I'm sorry to hear you're in such a bad place. Unfortunately, this is a common theme for people suffering from this terrible affliction. I see you also have CFS and the hopelessness and depression is crushing you. I know somewhat how you feel and its certainly more heartbreaking that you are willing to leave your family behind because the pain is unmanageable.

I would like to give you some hope and a few suggestions.

Firstly, there may be some treatments coming in the near future (2-3 years). We don't know how effective they are and if they'll treat every type of tinnitus, but there is strong evidence that some treatment will come to market soon.

Secondly, there is a massive influx of funding for ME/CFS due to Long COVID-19. On top of that, some of the greatest minds in medical research are working on treatment for CFS. Ron Davis has narrowed down some treatments that do work and help many CFS sufferers (Abilify, etc.). They are now working on the Metabolic Trap Theory and testing every possible medication and herb to see if it can help with the metabolic trap and faulty IDO1 receptor. I believe that we have never been closer to a cure.

I don't always want to go back to this, because I don't believe its a cure all or miracle drug, but have you tried LDN? There are many success stories of people with CFS, POTS and even tinnitus. Also, please have a look at this article I found:

Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment

The article specifically mentions resolution of tinnitus for patient (along with remission of the rest of their symptoms). I will likely start a separate thread to discuss the article because I find it amazing that even the patient's tinnitus was cured (understandably the tinnitus was caused by these other conditions).

Lastly, these diseases (tinnitus and CFS) are mentally straining and seem to either cause more harm to or target people with mental instability. Many people with CFS and/or tinnitus are depressed and anxious and that is understandable; so many times I read posts that someone is depressed because of these issues and I'm sure its true a lot of the time, but I would guess that for many people, if their symptoms resolved, we would still see an underlying mental health issue. Have you considered Ketamine therapy? I mention this because it is used to treat suicidal ideology and ironically seems to have a positive effect on tinnitus. If you woke up tomorrow, still had CFS and tinnitus and yet felt pretty great all round and could cope with your issues, do you still think that you would consider ending it in September? I feel like for many people, we don't need to cure the ringing, we just need to help them get past the ringing mentally. I understand this is all easier said than done but please consider all avenues first, especially for your family. I think some of the treatments I have posted might help you greatly.

 

[TrevorSanders]

may I ask what dosage stops your tinnitus for 4-5 hours?

1 mg.