Suicidal

[PeteJ]

To someone with Tinnitus, use of prescription meds is like dancing on a mine field.
It's all a high stakes guessing game, which could end very badly.

I would try to avoid them, unless there was no other options left, since most of them are ototoxic to begin with.

It's a guessing game with what's going on with tinnitus too.

Plus, with ear pain. I have asked doctors and an ENT but no one has helped me.

Do you think 11/10 severity ear pain justifies offing myself over?

If no one can alleviate the pain nor can solve it and stop it from happening then I think suicide is the only option.

I have two methods in mind.

 

[PeteJ]

Please don't let it be some form of this...

https://www.statnews.com/2016/02/18/noise-induced-ear-pain/

I am scared if it's nerve related and it does seem like right ear experiences something similar because whenever I have pain increase in the right ear, it does seem to happen after noise exposure but I can't determine what noise will do that.

My left ear pain doesn't seem to have a recognizable or identifiable link following noise exposure. But, pain 'lingers' on and doesn't go away. When it has subsided, I haven't noted duration or time it has subsided for before the pain increased to a severity level again. It's happened without any major noise exposure so I am totally bewildered and scared.

Sorry to ramble on...

 

[Daniel Lion]

Does anyone know something more about this Dr. Silverstein and his hyperacusis operation?

Yes, I do. I have contacted him and his team in Sarasota Florida. The doctor is the real deal, a pioneering ENT who has taught at Harvard and has actually invented surgical procedures. The round window surgery is quick and also reinforces the stapes. Results are published with the NIH, and it's all completely transparent. I believe they are running on a 80 % success rate, which I believe in.

I wrote to them, did a survey and have been corresponding with an intern. I need to send over my audiograms, and I am not sure if I am ready for the surgery... for a few reasons..

If you google his name and Hyperacusis and Sarsota Florida, you will really be impressed. I am a huge fan of this guy... you need to listen to some of the patient testimonials.
So yeah... if nothing else is working... it may be worth looking into.

I live in Laos, and have little kids to look after. I lack funds now and am certainly bothered by my hyperacusis, but it's better now than it was... so putting family, money, varying hyperacusis from awful to functional (not like a normal person)... I just don't know. Probably in a year or two for me.

The doctor is old, so I hope he is training younger surgeons to carry on his work properly and up to his standards.

It seems that the patients who undergo the surgery can actually lead normal lives and have normal thresholds to sound... which is simply amazing and a distant dream and reality for me, you, and a lot of us with hyperacusis.

Sorry for rambling on...Daniel

 

[Star64]

Does anyone know something more about this Dr. Silverstein and his hyperacusis operation?

You probably already know this, but I will post it just in case. Dr Silverstein has a website with patient testimonials regarding his treatment of hyperacusis. This website also informs about current research studies being undertaken for tinnitus and hyperacusis.

There is also on YouTube a detailed video about the Round and Oval Window Reinforcement surgery in detail, you probably can view it through his direct website though.

I am not sure if this surgery is available anywhere else that may be closer to you, but it may be worth enquiring. Maybe you could contact them through email and ask this question. Sorry to hear you suffer from this condition, it is very debilitating to say the least.

@Daniel Lion I am sure you know all this, and perhaps you know if the treatment is available elsewhere?

https://www.earsinus.com/
https://www.earrf.org/current-research-studies.html

 

[Star64]

My mood is already down.

I would like to solve this ear pain and even hope it can be solved. Do you know how it is having loud tinnitus and extremely hear pain?

I suspect it isn't typical hyperacusis because it's not like identifiable noise causes it. Not that I can tell. Plus, the pain persists for days and days. The ear is mostly in pain but there is soreness in the joint also, below the ear and sometimes the cartilage has pain too. There is some fullness and a sensation in the ear that is not normal. I don't know how to describe it so I call it fullness. There's a bit of burning too.

I just wish someone could diagnose it but I am also scared that it's not treatable because it is always is in pain. It has subsided before but then the pain keeps returning. I can't remember how long the pain persists for and how long it usually is after the pain has subsided.

The tinnitus is bad enough that I have to suffer with my left ear in chronic pain too?!? It's not even a mild earache like pain. It's excruciating and NSAIDs don't do anything which is why I want something stronger.

This is unique and not normal, right?

I know hyperacusis causes ear pain but isn't it from each loud noise? Most people instantly know what sound or noise caused the pain because the pain appeared right after it happened?

Well, my left ear pain doesn't seem to be happening that way. The pain comes on and just persists. It lasts a long time and the pain is severe.

Pete, I am aware your mood is already down and that is what concerns me, because taking Gabapentin could tip you over the edge. Sure, I understand you want pain relief but if you decide to take this drug please make sure you are monitored closely, and I certainly would not take it for a prolonged period of time.

You describe burning pain, which is how I describe my ear pain from TMJ, I was told at one stage I had trigeminal neuralgia because I also had face pain, TMJ causes all sorts of ear and surrounding facial pain. I also have what I describe as a fullness in my ear and distorted muffled hearing from time to time, I take regular Panadol which takes the edge off, I take 3 at once.

I went to a pain management seminar years ago run by anesthetists who swore taking 3 or 4 Panadol at once for severe pain was less harmless and just as effective as opioids. You should however not take more than 8 tablets per 24 hour period. I have given people IV Panadol before in a large hospital I worked at post op for pain management. It was just as effective as giving them IV opiods with less or no side effects noted. The only reason the hospital I worked at stopped using this as a pain management strategy was cost, it was more than triple the cost of regular IV opiods.

Nerve pain can be challenging to treat, but the medications they have available for nerve pain can themselves cause more problems. I hope you find something that will give you relief, and I just hope that whatever that is it doesn't cause you any more harm.

 

[TheDanishGirl]

Yes, I do. I have contacted him and his team in Sarasota Florida. The doctor is the real deal, a pioneering ENT who has taught at Harvard and has actually invented surgical procedures. The round window surgery is quick and also reinforces the stapes. Results are published with the NIH, and it's all completely transparent. I believe they are running on a 80 % success rate, which I believe in.

I wrote to them, did a survey and have been corresponding with an intern. I need to send over my audiograms, and I am not sure if I am ready for the surgery... for a few reasons..

If you google his name and Hyperacusis and Sarsota Florida, you will really be impressed. I am a huge fan of this guy... you need to listen to some of the patient testimonials.
So yeah... if nothing else is working... it may be worth looking into.

I live in Laos, and have little kids to look after. I lack funds now and am certainly bothered by my hyperacusis, but it's better now than it was... so putting family, money, varying hyperacusis from awful to functional (not like a normal person)... I just don't know. Probably in a year or two for me.

The doctor is old, so I hope he is training younger surgeons to carry on his work properly and up to his standards.

It seems that the patients who undergo the surgery can actually lead normal lives and have normal thresholds to sound... which is simply amazing and a distant dream and reality for me, you, and a lot of us with hyperacusis.

Sorry for rambling on...Daniel

You probably already know this, but I will post it just in case. Dr Silverstein has a website with patient testimonials regarding his treatment of hyperacusis. This website also informs about current research studies being undertaken for tinnitus and hyperacusis.

There is also on YouTube a detailed video about the Round and Oval Window Reinforcement surgery in detail, you probably can view it through his direct website though.

I am not sure if this surgery is available anywhere else that may be closer to you, but it may be worth enquiring. Maybe you could contact them through email and ask this question. Sorry to hear you suffer from this condition, it is very debilitating to say the least.

@Daniel Lion I am sure you know all this, and perhaps you know if the treatment is available elsewhere?

https://www.earsinus.com/
https://www.earrf.org/current-research-studies.html

Thank you both for this awesome detailed description of the doctor and the surgery!

I don't think I am ready for the surgery yet. I want to try other things first and just let time pass and see if it goes back down to baseline, but if not, or even in the unlucky event that it gets worse, it's very comforting to know that there is a possibility to regain my life quality with this surgery. I'll google him and the surgery and read up on it all, that's for sure.

 

[Daniel Lion]

Thank you both for this awesome detailed description of the doctor and the surgery!

I don't think I am ready for the surgery yet. I want to try other things first and just let time pass and see if it goes back down to baseline, but if not, or even in the unlucky event that it gets worse, it's very comforting to know that there is a possibility to regain my life quality with this surgery. I'll google him and the surgery and read up on it all, that's for sure.

My feelings are exactly same as yours.
Hope you feel better... Hope I feel better... Hope we feel better... Hope all of us in pain feel better.

 

[HootOwl]

I'm starting to feel like I'm the only one with this specific form of severe reactive T/distortion. My mom was rustling the bed sheets today and it went through the roof and as soon as she left it went away. Fucking bed sheets. I tried to replicate it and sure enough even just rustling quietly created this whistling feedback noise.

I can't find peace or escape anywhere I go. I'm just laying here in bed trying to not cry.

Does anyone have their T react to everything??? Except music and voices? But literally everything else?? And react loudly? But then immediately and I mean immediately fade. I'm starting to wonder if I have high frequency/broadband sound distortion due to severe amplification and not really reactive T...I don't know, just rambling. Or maybe it's one and the same.

I just feel so alone. Please tell me I'm not alone in this. I'm so sorry if I sound like a broken record but I can't escape with sound or without. All of my tones blast me without sound and the whistling/crickets become unbearably loud with ANY sound to the point where it feels like it physically hurts.

 

[LongWait]

IL try n get Xmas out of the way ,can't take much more of this,2 years,Been go in bars etc with ear plugs in,tinnitus becoming too much

 

[GoatSheep]

I just can't take it anymore. I step outside onto my balcony where it's fairly quiet and instead of hearing gentle wind I hear a screeching overlay. I just can't do it anymore. I feel like I'm having a breakdown. I'm crying every day now.

Does anyone else have reactive to just wind?? How the hell do you cope? I can't even be outside, this is sending me into the darkest spiral I've ever had

Sounds like dysacusis.

 

[arctic loon]

@TheDanishGirl there's also Doctor Banerjee who does the surgery in the UK. So, a closer to travel for those located in Europe

 

[Harley]

I'm starting to feel like I'm the only one with this specific form of severe reactive T/distortion. My mom was rustling the bed sheets today and it went through the roof and as soon as she left it went away. Fucking bed sheets. I tried to replicate it and sure enough even just rustling quietly created this whistling feedback noise.

I can't find peace or escape anywhere I go. I'm just laying here in bed trying to not cry.

Does anyone have their T react to everything??? Except music and voices? But literally everything else?? And react loudly? But then immediately and I mean immediately fade. I'm starting to wonder if I have high frequency/broadband sound distortion due to severe amplification and not really reactive T...I don't know, just rambling. Or maybe it's one and the same.

I just feel so alone. Please tell me I'm not alone in this. I'm so sorry if I sound like a broken record but I can't escape with sound or without. All of my tones blast me without sound and the whistling/crickets become unbearably loud with ANY sound to the point where it feels like it physically hurts.

You are not alone, but as I mentioned before ours is likely one of the worst types of Tinnitus in existence, since escaping the reactive sound is next to impossible.

 

[HootOwl]

You are not alone, but as I mentioned before ours is likely one of the worst types of Tinnitus in existence, since escaping the reactive sound is next to impossible.

Right right sorry, it's just so hard to think straight. Does yours react to basically all sounds as well? On my other thread I know several people mentioned their reactivity but I didn't really see anyone mention that almost EVERY sound causes it. Maybe I'm wrong, sorry if I am

[]

 

[Harley]

Right right sorry, it's just so hard to think straight. Does yours react to basically all sounds as well? On my other thread I know several people mentioned their reactivity but I didn't really see anyone mention that almost EVERY sound causes it. Maybe I'm wrong, sorry if I am

[]

Yes it does, except for pure tone at my Tinnitus frequency.
Does yours get masked by pure tone too?

I could never understand what people mean by "masking" (I wish).
I feel like I died 3 years ago.

 

[HootOwl]

Yes it does, except for pure tone at my Tinnitus frequency.
Does yours get masked by pure tone too?

I could never understand what people mean by "masking" (I wish).
I feel like I died 3 years ago.

No, not in any way. Only loud crickets that cover the feedback whistle/howl sound work. Even moving my neck from side to side causes the feedback sound to whirl up. It's that bad. It's like any sound that enters my ear comes off as feedback.

I know what you mean, I think I died as well.

 

[HootOwl]

Wait you've coped for 3 years? You are so much stronger than me. I want to end it all now. I can't even move my neck or body without hearing this horrible noise.

I think that's what I mean by feeling alone. When all you need to make it react horribly is turning your head so that a small bit of wind enters your ear it feels like why even go on.

I'm just so damn confused. It feels reactive but now I'm almost thinking it's just extreme amplification, because now the sounds are causing me to wince like in the shower. They feel so loud.

 

[Bartoli]

The round window surgery is quick and also reinforces the stapes.

It definitely looks credible but I can't wrap my little brain around how a "mechanical" surgery of the round window can improve a supposedly nerve-related complaint. Anyone cares to explain in simple terms?

 

[Harley]

Wait you've coped for 3 years? You are so much stronger than me. I want to end it all now. I can't even move my neck or body without hearing this horrible noise.

I think that's what I mean by feeling alone. When all you need to make it react horribly is turning your head so that a small bit of wind enters your ear it feels like why even go on.

I'm just so damn confused. It feels reactive but now I'm almost thinking it's just extreme amplification, because now the sounds are causing me to wince like in the shower. They feel so loud.

The only thing that keeps me alive right now is a fading memory of the normal life, which I had once enjoyed so much before this evil, POS condition visited upon me.

That and the possibility of Susan Shore device coming out (hopefully sooner than later) and offering me some relief.

 

[HootOwl]

The only thing that keeps me alive right now is a fading memory of the normal life, which I had once enjoyed so much before this evil, POS condition visited upon me.

That and the possibility of Susan Shore device coming out (hopefully sooner than later) and offering me some relief.

I'm crying, you so deserve to be happy. Everyone on this thread does. My heart just aches so much for myself and others. Oh god, this is just too much. You will get better from one of these treatments. I'm not confident about myself, I think my symptoms are too severe.

 

[joe e]

It is so VERY different to want to die vs actually going through with it. I learned this personally a few weeks ago after I couldn't go through with it. Some people will of course do it, but some like me, are just not able to and will reluctantly suffer. Suicidal people wont know until they are actually at the moment of choice. It would likely be different if a non-violent option like physician assisted suicide were available.

I am suffering beyond words. I have no idea anymore what people are talking about with "good days" or "masking", or tinnitus being affected by stress or sleep or foods or supplements. its like we're talking about something different but applying the same word, tinnitus. I lost my job, friends, everything. My insomnia is unbearable, conventional advise simply does not apply. My brain has somehow lost ability to sleep more than an hour per night. I would not have thought the human body can survive on such little sleep.

I admit it hurts when i read some comments to others saying "we've all been there". That's simply not reality, not even close. But it's good that very few will truly know what I am going through. I just wish a peaceful death could find me.

Love you all.

 

[TheDanishGirl]

It is so VERY different to want to die vs actually going through with it. I learned this personally a few weeks ago after I couldn't go through with it. Some people will of course do it, but some like me, are just not able to and will reluctantly suffer. Suicidal people wont know until they are actually at the moment of choice. It would likely be different if a non-violent option like physician assisted suicide were available.

I am suffering beyond words. I have no idea anymore what people are talking about with "good days" or "masking", or tinnitus being affected by stress or sleep or foods or supplements. its like we're talking about something different but applying the same word, tinnitus. I lost my job, friends, everything. My insomnia is unbearable, conventional advise simply does not apply. My brain has somehow lost ability to sleep more than an hour per night. I would not have thought the human body can survive on such little sleep.

I admit it hurts when i read some comments to others saying "we've all been there". That's simply not reality, not even close. But it's good that very few will truly know what I am going through. I just wish a peaceful death could find me.

Love you all.

That's what I'm personally so scared of. I really WANT to be able to trough offing myself, if I get worse and nothing helps, and I am just greatly suffering 24/7, without relief in sight. I don't WANT to live like that. It's my personal rational choice.

 

[Allan1967]

Having been very close a few weeks ago all I can say it takes a HUGE amount of courage to actually commit suicide. There is no painless option readily available. There's a quick one, depending on where you live, but actually going through with it is something beyond what I can comprehend. I'm still recovering from the shock of it, even today. It's like a blur, a faint nightmare of someone that wasn't me. Absolutely horrific experience.

 

[HootOwl]

This is just not possible. How can it be possible for me to sit in a quiet car and RAISE MY SHOULDERS and my ear erupts with painful feedback noise. Something is so severely wrong here. I just can't understand what is happening to me. If I move at all the feedback screech just smothers me.

The only thing I can do is lay in bed as still as possible right now and listen to piano music and crickets. This just can't be happening. This isn't a life. Last week I was fairly functional tinnitus sufferer and now I have reactive noises beyond the degree of anything I thought humanely possible.

I have never been more scared in my entire life.

 

[Harley]

I'm crying, you so deserve to be happy. Everyone on this thread does. My heart just aches so much for myself and others. Oh god, this is just too much. You will get better from one of these treatments. I'm not confident about myself, I think my symptoms are too severe.

Thank you for the kind words.
None of us here deserve this nightmare.
This type of intense suffering for no reason whatsoever should not even exist in nature, but here we are.

I hope you do make it out alive, but I do realize it is a race against time for all of us (as far as any real treatments are concerned).
Try to take it one day at the time for now.

 

[joe e]

Having been very close a few weeks ago all I can say it takes a HUGE amount of courage to actually commit suicide. There is no painless option readily available. There's a quick one, depending on where you live, but actually going through with it is something beyond what I can comprehend. I'm still recovering from the shock of it, even today. It's like a blur, a faint nightmare of someone that wasn't me. Absolutely horrific experience.

I know exactly what you mean. I wont give disturbing details, but I was in my room in the middle of the night about to go through with it for about 20 minutes. I just couldn't, it's an impossible feeling to describe, every bit of me wants this nightmare to end, but fear became the stronger emotion.

I'm in a very strange place now mentally, like floating in a fog of fear and disbelief and pain and confusion and non-reality. I'm scared of every new day because I don't feel part of the real world any more. (Does anyone know what I'm talking about?). I know I sound crazy, I guess that means I have a thread of sanity left. My plan to end my life was my comfort. With that gone, I simply don't know how to live. Yes, I've seen a psychiatrist and a dozen docs. So lost.

 

[PeteJ]

Pete, I am aware your mood is already down and that is what concerns me, because taking Gabapentin could tip you over the edge. Sure, I understand you want pain relief but if you decide to take this drug please make sure you are monitored closely, and I certainly would not take it for a prolonged period of time.

You describe burning pain, which is how I describe my ear pain from TMJ, I was told at one stage I had trigeminal neuralgia because I also had face pain, TMJ causes all sorts of ear and surrounding facial pain. I also have what I describe as a fullness in my ear and distorted muffled hearing from time to time, I take regular Panadol which takes the edge off, I take 3 at once.

I went to a pain management seminar years ago run by anesthetists who swore taking 3 or 4 Panadol at once for severe pain was less harmless and just as effective as opioids. You should however not take more than 8 tablets per 24 hour period. I have given people IV Panadol before in a large hospital I worked at post op for pain management. It was just as effective as giving them IV opiods with less or no side effects noted. The only reason the hospital I worked at stopped using this as a pain management strategy was cost, it was more than triple the cost of regular IV opiods.

Nerve pain can be challenging to treat, but the medications they have available for nerve pain can themselves cause more problems. I hope you find something that will give you relief, and I just hope that whatever that is it doesn't cause you any more harm.

How do you get Panadol?

Are people saying my ear pain will never stop or my ears won't heal on their own? Honestly?

The pain subsided before but my ear still didn't feel 100% normal. But, at least, the severe pain wasn't there.

It's been there for what seems like a really long time now. No acoustic sound or noise does anything from what I can tell. The pain is 8/10 and then goes to 9 or 10/10 and remains.

I can't do anything when it is like this. The tinnitus is loud too. If this doesn't change soon I will try a suicide attempt. I can't live with constant ear pain. So, honestly, is this permanent or chronic? I don't know what to do but the pain incapacitates me and I am tired of living like this. It's no life.

My right ear is in pain too. It is a different feeling though. There is a tightness sensation. The cartilage and ear canal area both are in pain. I think it's from typical hyperacusis although I thought the pain in my right ear was subsiding but the tightness pain is bad again.

 

[Harley]

I know exactly what you mean. I wont give disturbing details, but I was in my room in the middle of the night about to go through with it for about 20 minutes. I just couldn't, it's an impossible feeling to describe, every bit of me wants this nightmare to end, but fear became the stronger emotion.

I'm in a very strange place now mentally, like floating in a fog of fear and disbelief and pain and confusion and non-reality. I'm scared of every new day because I don't feel part of the real world any more. (Does anyone know what I'm talking about?). I know I sound crazy, I guess that means I have a thread of sanity left. My plan to end my life was my comfort. With that gone, I simply don't know how to live. Yes, I've seen a psychiatrist and a dozen docs. So lost.

I know exactly how you feel.
Your physical body is still here, but mentally you had crossed over to some other dimension where you are being held hostage and brutally tortured 24/7.

You are looking at the world from the outside and unable to relate to people and their so called problems anymore.

None of this feels real, because you know that something THIS bad cannot possibly exist and be happening to you.

I'm living inside the same nightmare my friend.

 

[PeteJ]

It is so VERY different to want to die vs actually going through with it. I learned this personally a few weeks ago after I couldn't go through with it. Some people will of course do it, but some like me, are just not able to and will reluctantly suffer. Suicidal people wont know until they are actually at the moment of choice. It would likely be different if a non-violent option like physician assisted suicide were available.

I am suffering beyond words. I have no idea anymore what people are talking about with "good days" or "masking", or tinnitus being affected by stress or sleep or foods or supplements. its like we're talking about something different but applying the same word, tinnitus. I lost my job, friends, everything. My insomnia is unbearable, conventional advise simply does not apply. My brain has somehow lost ability to sleep more than an hour per night. I would not have thought the human body can survive on such little sleep.

I admit it hurts when i read some comments to others saying "we've all been there". That's simply not reality, not even close. But it's good that very few will truly know what I am going through. I just wish a peaceful death could find me.

Love you all.

I feel like that too.

I want improvement but I don't see it coming and I don't want to live in suffering. But, it will be difficult to go through with it even though I know that the suffering will end. There's no easy method either especially with severe tinnitus and ear pain making it extremely difficult to concentrate.

People have no idea what we go through. I am getting tired of faking smiles with people I encounter too.

 

[Greg Sacramento]

@PeteJ Just another link that describes issues, issues that I had mentioned to you before. If warm and cold compresses are not working well, or a thin self boil mouth guard from Walmart that cover a few of the top front side teeth, then:
try some cold and allergy OTC relief medication from Walmart or a drug store.

https://www.sheboyganwidds.com/ear-symptoms-tmj/

 

[valeri]

That's what I'm personally so scared of. I really WANT to be able to trough offing myself, if I get worse and nothing helps, and I am just greatly suffering 24/7, without relief in sight. I don't WANT to live like that. It's my personal rational choice.

Are you in a bad spot with your tinnitus?
I thought your tinnitus was improving or my brain is confusing things once again