Suicidal

[Kriszti]

If I ever get the guts to commit suicide I'll just make sure everyone knows it was because of tinnitus and not depression or any other BS they try to blame it for.

It will be my last contribution to the cause, and maybe Kent Taylor and I can become the two martyrs that were needed in order to bring awareness of this disease, and people in the future will no longer have to suffer from it, and all the Jastreboffs of the world would be put behind bars for all the pain they've caused.

I see where you are coming from, I used to have some "romantic" idealization that if I have to surrender to tinnitus I will let everyone to know that it was indeed because of tinnitus. But as Zugzug said, no one will actually care besides your loved ones and fellow tinnitus sufferers. To the outside world, you would be some mentally problematic person who had "adjustment disorder" about a little ringing.

I read somewhere in a tabloid (found it, Daily Mail) magazine about Gaby Olthuis choosing euthanasia because of tinnitus and she got blamed for wanting to end her life even if she "didn't have a terminal illness".

"It is chilling enough that any mother of young children, particularly if she is not terminally ill, could choose to die in this way. But surely it makes a mockery of the sanctity of human life that her euthanasia has been accepted without a public outcry in Holland?"

Nobody understands how tinnitus, let alone hyperacusis/noxacusis can ruin your life.

 

[FGG]

I see where you are coming from, I used to have some "romantic" idealization that if I have to surrender to tinnitus I will let everyone to know that it was indeed because of tinnitus. But as Zugzug said, no one will actually care besides your loved ones and fellow tinnitus sufferers. To the outside world, you would be some mentally problematic person who had "adjustment disorder" about a little ringing.

I read somewhere in a tabloid (found it, Daily Mail) magazine about Gaby Olthuis choosing euthanasia because of tinnitus and she got blamed for wanting to end her life even if she "didn't have a terminal illness".

"It is chilling enough that any mother of young children, particularly if she is not terminally ill, could choose to die in this way. But surely it makes a mockery of the sanctity of human life that her euthanasia has been accepted without a public outcry in Holland?"

Nobody understands how tinnitus, let alone hyperacusis/noxacusis can ruin your life.

I agree with this, unfortunately. I'm not immediately suicidal but every month that passes, I lose more lifelines so I can't guarantee this won't be me at some point. But I also know it won't change anything.

Early on a friend told me, "listen if anyone in the world can hack this, it's you."

That same friend stopped checking on me a year ago when it was clear I would never be the same.

The thing that drives me to go on, the one thing that I use to push through each day is the thought that maybe I will get to hear music again even just one more time before I die. It's the one thing that could help erase my suffering (the distortions, the hearing loss, the tinnitus, the noxacusis--though this is acute and could get better--the visual snow, the isolation, the loneliness, all the losses I have endured the last few years), even 20 years of it if that's how long it took.

But lately, it often seems like I should just quit. Maybe this feeling will pass tomorrow but it will just come back as it often does. I'm getting much braver about the thought of ending things and that scares me, too.

Weirdly, at the same time I feel very confident about the future for many of you. The science is coming along. It will happen. But Macrolide ototoxicity is rare and when severe, it destroys hair cells (both types), the stria vascularis, permanently alters endocochlear potential, and is a central auditory toxin.

I had this idea (if I ever got better) of working with a musician to show people the horror of what I hear, the distortions. I don't know if I will get that chance. But I'm coming to realize it wouldn't matter. It's almost as if people don't want to be educated about how horrible hearing disorders are so it wouldn't do any good.

If I reach that final point, though, I will give you all my name and maybe you can remember that I did actually try very hard. All of you would understand that at least.

 

[Zugzug]

I see where you are coming from, I used to have some "romantic" idealization that if I have to surrender to tinnitus I will let everyone to know that it was indeed because of tinnitus. But as Zugzug said, no one will actually care besides your loved ones and fellow tinnitus sufferers. To the outside world, you would be some mentally problematic person who had "adjustment disorder" about a little ringing.

I read somewhere in a tabloid (found it, Daily Mail) magazine about Gaby Olthuis choosing euthanasia because of tinnitus and she got blamed for wanting to end her life even if she "didn't have a terminal illness".

"It is chilling enough that any mother of young children, particularly if she is not terminally ill, could choose to die in this way. But surely it makes a mockery of the sanctity of human life that her euthanasia has been accepted without a public outcry in Holland?"

Nobody understands how tinnitus, let alone hyperacusis/noxacusis can ruin your life.

Something to consider, to add to your post:

I have clinically strong evidence for Sjogren's Syndrome from a high positive biopsy score. My doctors are still throwing around conversion disorder and stuff. It seems like no matter what, hyperacusis and tinnitus always come back to "you aren't processing this problem correctly," as opposed to "your tissue is getting destroyed."

Very gosh darn depressing, actually.

 

[OptimusPrimed]

I agree with this, unfortunately. I'm not immediately suicidal but every month that passes, I lose more lifelines so I can't guarantee this won't be me at some point. But I also know it won't change anything.

Early on a friend told me, "listen if anyone in the world can hack this, it's you."

That same friend stopped checking on me a year ago when it was clear I would never be the same.

The thing that drives me to go on, the one thing that I use to push through each day is the thought that maybe I will get to hear music again even just one more time before I die. It's the one thing that could help erase my suffering (the distortions, the hearing loss, the tinnitus, the noxacusis--though this is acute and could get better--the visual snow, the isolation, the loneliness, all the losses I have endured the last few years), even 20 years of it if that's how long it took.

But lately, it often seems like I should just quit. Maybe this feeling will pass tomorrow but it will just come back as it often does. I'm getting much braver about the thought of ending things and that scares me, too.

Weirdly, at the same time I feel very confident about the future for many of you. The science is coming along. It will happen. But Macrolide ototoxicity is rare and when severe, it destroys hair cells (both types), the stria vascularis, permanently alters endocochlear potential, and is a central auditory toxin.

I had this idea (if I ever got better) of working with a musician to show people the horror of what I hear, the distortions. I don't know if I will get that chance. But I'm coming to realize it wouldn't matter. It's almost as if people don't want to be educated about how horrible hearing disorders are so it wouldn't do any good.

If I reach that final point, though, I will give you all my name and maybe you can remember that I did actually try very hard. All of you would understand that at least.

Your posts are extremely high quality. You have to stick around for that reason . Remember, deep brain stimulation, implants and cochlear implants are coming along at a rapid pace too. So even if your cochlea is too fried for regeneration you could become a cyberpunk. There is ALWAYS hope my friend.

Also remember, you are NEVER suffering alone. I have the same distortions, ringing 24/7 in my right ear, morse code tinnitus in my left ear and somatosensory tinnitus in my right ear. And there are people who have it worse than me. I have very solid family and friends in my life to support me. I dig deep and find the strength to keep pushing forward for them. When you take the exit door, you just take that suffering and pass it on to the people you love. I've seen it so many times.

 

[AliasM]

I saw a psychiatrist this week. I told him how I just need to die, really really really can't cope with the psychological torture that is severe tinnitus and comorbids. He said I am not depressed, and an antidepressant won't work. He says I have an adjustment disorder. I am a mess right now. The tinnitus is so severe, no one could cope with this. I am getting worse. My "good" days and my bad days all use to be better than what I have now. This seems progressive, yet I am not getting any medical help to stop it. They keep telling me to go to therapy. I have tried 3 therapists. Talking about it and 'being kind to myself' DOES NOT HELP.

I just want to die... which kills me because I adore my kids. Absolutely love them with all I have and want to see them grow up and have their own families. But I suffer every single day, and I just can't suffer anymore. Every day I die inside a little more. My spirit is already leaving.

 

[Gee82]

I agree with this, unfortunately. I'm not immediately suicidal but every month that passes, I lose more lifelines so I can't guarantee this won't be me at some point. But I also know it won't change anything.

Early on a friend told me, "listen if anyone in the world can hack this, it's you."

That same friend stopped checking on me a year ago when it was clear I would never be the same.

The thing that drives me to go on, the one thing that I use to push through each day is the thought that maybe I will get to hear music again even just one more time before I die. It's the one thing that could help erase my suffering (the distortions, the hearing loss, the tinnitus, the noxacusis--though this is acute and could get better--the visual snow, the isolation, the loneliness, all the losses I have endured the last few years), even 20 years of it if that's how long it took.

But lately, it often seems like I should just quit. Maybe this feeling will pass tomorrow but it will just come back as it often does. I'm getting much braver about the thought of ending things and that scares me, too.

Weirdly, at the same time I feel very confident about the future for many of you. The science is coming along. It will happen. But Macrolide ototoxicity is rare and when severe, it destroys hair cells (both types), the stria vascularis, permanently alters endocochlear potential, and is a central auditory toxin.

I had this idea (if I ever got better) of working with a musician to show people the horror of what I hear, the distortions. I don't know if I will get that chance. But I'm coming to realize it wouldn't matter. It's almost as if people don't want to be educated about how horrible hearing disorders are so it wouldn't do any good.

If I reach that final point, though, I will give you all my name and maybe you can remember that I did actually try very hard. All of you would understand that at least.

It breaks my heart to read that you're suffering so much and thinking of giving up.

During these past 2 years of loneliness and despair my only grip to life has been this forum and your posts made a massive contribution in keeping me alive.

Every day I would log in and find that extra bit of hope, support and knowledge I just needed to get through the day.

Please stay strong, you deserve to heal.

 

[Lukee]

I agree with this, unfortunately. I'm not immediately suicidal but every month that passes, I lose more lifelines so I can't guarantee this won't be me at some point. But I also know it won't change anything.

Early on a friend told me, "listen if anyone in the world can hack this, it's you."

That same friend stopped checking on me a year ago when it was clear I would never be the same.

The thing that drives me to go on, the one thing that I use to push through each day is the thought that maybe I will get to hear music again even just one more time before I die. It's the one thing that could help erase my suffering (the distortions, the hearing loss, the tinnitus, the noxacusis--though this is acute and could get better--the visual snow, the isolation, the loneliness, all the losses I have endured the last few years), even 20 years of it if that's how long it took.

But lately, it often seems like I should just quit. Maybe this feeling will pass tomorrow but it will just come back as it often does. I'm getting much braver about the thought of ending things and that scares me, too.

Weirdly, at the same time I feel very confident about the future for many of you. The science is coming along. It will happen. But Macrolide ototoxicity is rare and when severe, it destroys hair cells (both types), the stria vascularis, permanently alters endocochlear potential, and is a central auditory toxin.

I had this idea (if I ever got better) of working with a musician to show people the horror of what I hear, the distortions. I don't know if I will get that chance. But I'm coming to realize it wouldn't matter. It's almost as if people don't want to be educated about how horrible hearing disorders are so it wouldn't do any good.

If I reach that final point, though, I will give you all my name and maybe you can remember that I did actually try very hard. All of you would understand that at least.

I think the many messages I have read here sum up your contribution to the site but also people's personal struggle. You give a lot of sufferers hope and the will the carry on. On a couple occasions now I have stopped to think how much mental fortitude you have to carry on contribute the way you do.

I saw a psychiatrist this week. I told him how I just need to die, really really really can't cope with the psychological torture that is severe tinnitus and comorbids. He said I am not depressed, and an antidepressant won't work. He says I have an adjustment disorder. I am a mess right now. The tinnitus is so severe, no one could cope with this. I am getting worse. My "good" days and my bad days all use to be better than what I have now. This seems progressive, yet I am not getting any medical help to stop it. They keep telling me to go to therapy. I have tried 3 therapists. Talking about it and 'being kind to myself' DOES NOT HELP.

I just want to die... which kills me because I adore my kids. Absolutely love them with all I have and want to see them grow up and have their own families. But I suffer every single day, and I just can't suffer anymore. Every day I die inside a little more. My spirit is already leaving.

I really feel for you. I know what it's like to be torn between wishing to see your kids' future and hoping not to live another minute. It's disgusting that something like this could invoke so much pain that we are willing to leave everything we love for peace. I see you are struggling and have even discussed Pegasos so why not try some treatments at this point? You are worried about getting worse but it looks like you are already at your limit so things can only hopefully get better for you. You have a script for LDN already, maybe try Ketamine if available, Prednisone or cortisone, chiropractor or maybe a Lidocaine patch on your neck? If any type of treatment shows improvement, I think it will give you the will to get better and hope for the future. At least try all available options before considering the alternative.

 

[Foamearplugssuck]

Ugh sorry I just need a space to vent. This shit is getting so tiring.

I wanted to go for a walk and listen to one of my favorite albums. It came out a few weeks ago, and I knew I would best enjoy it outside. Since I live in the city, I knew I'd have to wake up early in order to listen because I can't use headphones and I didn't want many people to be around.

So today I woke up at 6 am. I felt like shit, since I didn't get enough sleep which is a pretty big vestibular migraine trigger for me. But I decided to go for a walk anyways. But the park was crowded. I was constantly next to someone the entire time, and there was so much traffic, so even if it weren't for the people, I wouldn't have been able to listen because of all the cars.

Every single person I walked by was wearing headphones, which really got to me. I took wearing headphones and listening to music for granted. I never thought that one day such a simple joy would be taken from me. Now I can't even go for a walk and listen to music, which is something that basically everyone else in my neighborhood can do. And it really, really gets to me that I can't have what others have. I know everyone has their own chronic health issues and what not and tinnitus/migraines are mine but it really fucking sucks. It really fucking sucks to feel like I'm wasting the so-called "best years of my life" because my brain is too damn sensitive to handle a bit of hearing loss. Now I'm ranting on the internet, and I can't even listen to music to feel better.

God. I just wish headphones didn't make my tinnitus sound like the voice of Satan himself screaming in my ear.

 

[Ava Lugo]

Ugh sorry I just need a space to vent. This shit is getting so tiring.

I wanted to go for a walk and listen to one of my favorite albums. It came out a few weeks ago, and I knew I would best enjoy it outside. Since I live in the city, I knew I'd have to wake up early in order to listen because I can't use headphones and I didn't want many people to be around.

So today I woke up at 6 am. I felt like shit, since I didn't get enough sleep which is a pretty big vestibular migraine trigger for me. But I decided to go for a walk anyways. But the park was crowded. I was constantly next to someone the entire time, and there was so much traffic, so even if it weren't for the people, I wouldn't have been able to listen because of all the cars.

Every single person I walked by was wearing headphones, which really got to me. I took wearing headphones and listening to music for granted. I never thought that one day such a simple joy would be taken from me. Now I can't even go for a walk and listen to music, which is something that basically everyone else in my neighborhood can do. And it really, really gets to me that I can't have what others have. I know everyone has their own chronic health issues and what not and tinnitus/migraines are mine but it really fucking sucks. It really fucking sucks to feel like I'm wasting the so-called "best years of my life" because my brain is too damn sensitive to handle a bit of hearing loss. Now I'm ranting on the internet, and I can't even listen to music to feel better.

God. I just wish headphones didn't make my tinnitus sound like the voice of Satan himself screaming in my ear.

I feel the exact same way every time I see customers walk around with AirPods in their ears.

 

[Brendon]

I see where you are coming from, I used to have some "romantic" idealization that if I have to surrender to tinnitus I will let everyone to know that it was indeed because of tinnitus. But as Zugzug said, no one will actually care besides your loved ones and fellow tinnitus sufferers. To the outside world, you would be some mentally problematic person who had "adjustment disorder" about a little ringing.

I read somewhere in a tabloid (found it, Daily Mail) magazine about Gaby Olthuis choosing euthanasia because of tinnitus and she got blamed for wanting to end her life even if she "didn't have a terminal illness".

"It is chilling enough that any mother of young children, particularly if she is not terminally ill, could choose to die in this way. But surely it makes a mockery of the sanctity of human life that her euthanasia has been accepted without a public outcry in Holland?"

Nobody understands how tinnitus, let alone hyperacusis/noxacusis can ruin your life.

I'd be signing up for euthenasia today if I could. Give me the juice. I'm ready.

 

[AliasM]

Thank you Lukee. I have tried a lot of things but not all you have mentioned. I wouldn't even know where to get Ketamine or the patches.

It was decided last night that I am going to live with my father down south. I need to be on complete bed rest to settle my brain. Being at home with 4 kids I cannot rest. My tinnitus is progressing quite fast. My entire brain is now loud with pulsating swirling static. I didn't have this in the first few months. I got ringing and other sounds in various parts of my brain but other parts of my brain were clear. Now my entire brain is filled with permanemt static noise all the time. That is on top of layers of other sounds.

I was reading about Post Concussion Syndrome last night and I believe this is what I had after lifting the weight badly at the gym. Everything I read says that it triggers an especially severe form of life long tinnitus and the prognosis isn't good. I grieve so hard for my life, and regret so much going to the gym. My God.

I am working with an audiologist for tinnitus councelling and she keeps telling me that the severe tinnitus is only that way because of my distress. I strongly cannot get on board with that. Chicken and egg - the severity came first. I feel like that narrative is victim blaming. No one could handle what I am trying to survive.

I am going down south to rest in bed for 2 months. After then I will know if any form of recovery is possible. My God I need to end this suffering, but I know I will be passing that suffering onto my family. What a horrendous situation.

I have some new vitamins coming next week which I plan to try as well - Vinpocetine, bioflavonoids and a few others. I am really not doing well. The psychiatrist was even willing to let me become dependent on benzos just for some relief. At the moment I am only taking them as needed. In the beginning that wasn't necessary at all, then I went to one a week. Now I am on about 4 a week. I don't want to fall into that trap but, suffering.

 

[Lukee]

Thank you Lukee. I have tried a lot of things but not all you have mentioned. I wouldn't even know where to get Ketamine or the patches.

It was decided last night that I am going to live with my father down south. I need to be on complete bed rest to settle my brain. Being at home with 4 kids I cannot rest. My tinnitus is progressing quite fast. My entire brain is now loud with pulsating swirling static. I didn't have this in the first few months. I got ringing and other sounds in various parts of my brain but other parts of my brain were clear. Now my entire brain is filled with permanemt static noise all the time. That is on top of layers of other sounds.

I was reading about Post Concussion Syndrome last night and I believe this is what I had after lifting the weight badly at the gym. Everything I read says that it triggers an especially severe form of life long tinnitus and the prognosis isn't good. I grieve so hard for my life, and regret so much going to the gym. My God.

I am working with an audiologist for tinnitus councelling and she keeps telling me that the severe tinnitus is only that way because of my distress. I strongly cannot get on board with that. Chicken and egg - the severity came first. I feel like that narrative is victim blaming. No one could handle what I am trying to survive.

I am going down south to rest in bed for 2 months. After then I will know if any form of recovery is possible. My God I need to end this suffering, but I know I will be passing that suffering onto my family. What a horrendous situation.

I have some new vitamins coming next week which I plan to try as well - Vinpocetine, bioflavonoids and a few others. I am really not doing well. The psychiatrist was even willing to let me become dependent on benzos just for some relief. At the moment I am only taking them as needed. In the beginning that wasn't necessary at all, then I went to one a week. Now I am on about 4 a week. I don't want to fall into that trap but, suffering.

Glad to hear you're trying something out. I hope you find some relief on the time away. I don't know if you'll get much of anything trying the bioflavonoids or Vinpocetine but it's worth a try.

Also, have you considered a perilymph fistula? Straining while exercising might have caused this buck I'm no expert. I believe @Backpacker is the resident expert in this.

 

[AliasM]

Glad to hear you're trying something out. I hope you find some relief on the time away. I don't know if you'll get much of anything trying the bioflavonoids or Vinpocetine but it's worth a try.

Also, have you considered a perilymph fistula? Straining while exercising might have caused this buck I'm no expert. I believe @Backpacker is the resident expert in this.

Thank you. Yes, he did suggest perilymph fistula. I have read that it would be unlikely given I have it in both ears. Nonetheless, I went and saw an ENT and asked him about it. He laughed and threw me out.

When I get to my father's place, I will have no responsibilities so I will be on complete bed rest and follow the perilymph fistula protocol.

 

[Óscar PP]

I agree with this, unfortunately. I'm not immediately suicidal but every month that passes, I lose more lifelines so I can't guarantee this won't be me at some point. But I also know it won't change anything.

Early on a friend told me, "listen if anyone in the world can hack this, it's you."

That same friend stopped checking on me a year ago when it was clear I would never be the same.

The thing that drives me to go on, the one thing that i use to push through each day is the thought that maybe I will get to hear music again even just one more time before i die. It's the one thing that could help erase my suffering (the distortions, the hearing loss, the tinnitus, the noxacusis--though this is acute and could get better--the visual snow, the isolation, the loneliness, all the losses I have endured the last few years), even 20 years of it if that's how long it took.

But lately, it often seems like I should just quit. Maybe this feeling will pass tomorrow but it will just come back as it often does. I'm getting much braver about the thought of ending things and that scares me, too.

Weirdly, at the same time I feel very confident about the future for many of you. The science is coming along. It will happen. But Macrolide ototoxicity is rare and when severe, it destroys hair cells (both types), the stria vascularis, permanently alters endocochlear potential, and is a central auditory toxin.

I had this idea (if I ever got better) of working with a musician to show people the horror of what I hear, the distortions. I don't know if I will get that chance. But I'm coming to realize it wouldn't matter. It's almost as if people don't want to be educated about how horrible hearing disorders are so it wouldn't do any good.

If I reach that final point, though, I will give you all my name and maybe you can remember that I did actually try very hard. All of you would understand that at least.

Could you describe your distortions? I sometimes hear a ringing similar to my tinnitus when watching a movie (in scenes like an airplane or when suspense music kicks in).

 

[Óscar PP]

maybe a Lidocaine patch on your neck?

Can Lidocaine patches stop tinnitus? Do you need prescription for it? Even if it's temporary, I'd give out a limb for a day or two of silence...

 

[Lukee]

Can Lidocaine patches stop tinnitus? Do you need prescription for it? Even if it's temporary, I'd give out a limb for a day or two of silence...

There is a thread on here about Lidocaine patches and temporary relief. It helps for some but not all. I have read quite a few success stories about temporary relief from Lidocaine injections, IV and topical (patches or cream). Patches and creams might be legal OTC depending on country to country. EMLA is a popular Lidocaine cream and I believe they make patches. The thing is the patches can give relief because it's time released into your skin and creams won't do the same.

Good luck and let us know if you get any temporary relief.

 

[Foamearplugssuck]

Just had this thought:

I don't think "habituation" is a real thing. Us with tinnitus have to put so much extra caution into our daily lives.

How can we ever habituate when everyone around us gets to go to concerts and parties without a second thought? How can you habituate if you have to put earplugs on every time you leave the house? How can you habituate when you go to meet up with your friends and you're the only one wearing earplugs?

Sure, I'm used to the sound of the ringing, but every person I pass that is wearing headphones as they walk or doesn't have to wear earplugs is a painful reminder of my tinnitus.

 

[Óscar PP]

Just had this thought:

I don't think "habituation" is a real thing. Us with tinnitus have to put so much extra caution into our daily lives.

How can we ever habituate when everyone around us gets to go to concerts and parties without a second thought? How can you habituate if you have to put earplugs on every time you leave the house? How can you habituate when you go to meet up with your friends and you're the only one wearing earplugs?

Sure, I'm used to the sound of the ringing, but every person I pass that is wearing headphones as they walk or doesn't have to wear earplugs is a painful reminder of my tinnitus.

Same way someone in a wheelchair "habituates" to it. Tinnitus is an invisible disability, nothing less.

 

[Zugzug]

Just had this thought:

I don't think "habituation" is a real thing. Us with tinnitus have to put so much extra caution into our daily lives.

How can we ever habituate when everyone around us gets to go to concerts and parties without a second thought? How can you habituate if you have to put earplugs on every time you leave the house? How can you habituate when you go to meet up with your friends and you're the only one wearing earplugs?

Sure, I'm used to the sound of the ringing, but every person I pass that is wearing headphones as they walk or doesn't have to wear earplugs is a painful reminder of my tinnitus.

The ironic thing is that almost everyone is habituated as much as they can be. The reason why habituation is a dirty word is because there's always the implication that one can go "back to normal" or something.

The elephant in the room is that some people's habituated lives are just much lower quality than other's habituated lives. I mean, I'm certainly used to not talking, wearing muffs all day, never leaving my home, closing doors as gently as possible, using plastic silverware, showering quickly and on low water pressure, frequently crying, frequently having suicidal thoughts, etc.

It's just low quality lol.

 

[AliasM]

I saw my psychiatrist again yesterday. It is a waste of time, but you know... everyone screams GET HELP, GET HELP (e.g. my family) when you say that you are suffering so badly you just want to die. I went to appease them, not because I thought there is actually any help. Psychiatrist agrees I am not depressed anyway, and the only help he can offer is additional sleeping pharmaceuticals.

Anyway, reason for my post... I told him about my plans for Pegasos. I was led to believe before we began our relationship that what was said was said in confidence.

Haaaaaaa, not entirely so. He didn't mention any disclaimers. It turns out that he has to file a report (can't remember who to) for my VAD plans because the health system and government are all about preservation of life. He says they can cancel my Goddamn passport. I told him he would leave me with no option other than to throw myself in front of an express train, and their 'preservation of life' ideology is not as humane as they congratulate themselves for.

I self-discharged on my way out.

Oh, and I spoke to my tinnitus counselling audiologist this week. It was our second session. She says there is no such thing as worse or worsening tinnitus, only a shift in our perception of it. I could have choked. The victim blaming and gaslighting that goes along with having this condition is absolutely unreal. I'm discharging from that "get help" service as well.

 

[Wrfortiscue]

I saw my psychiatrist again yesterday. It is a waste of time, but you know... everyone screams GET HELP, GET HELP (e.g. my family) when you say that you are suffering so badly you just want to die. I went to appease them, not because I thought there is actually any help. Psychiatrist agrees I am not depressed anyway, and the only help he can offer is additional sleeping pharmaceuticals.

Anyway, reason for my post... I told him about my plans for Pegasos. I was led to believe before we began our relationship that what was said was said in confidence.

Haaaaaaa, not entirely so. He didn't mention any disclaimers. It turns out that he has to file a report (can't remember who to) for my VAD plans because the health system and government are all about preservation of life. He says they can cancel my Goddamn passport. I told him he would leave me with no option other than to throw myself in front of an express train, and their 'preservation of life' ideology is not as humane as they congratulate themselves for.

I self-discharged on my way out.

Oh, and I spoke to my tinnitus counselling audiologist this week. It was our second session. She says there is no such thing as worse or worsening tinnitus, only a shift in our perception of it. I could have choked. The victim blaming and gaslighting that goes along with having this condition is absolutely unreal. I'm discharging from that "get help" service as well.

People that don't suffer from it say things like "get used to it" or "it's not a big deal, I have ringing".

 

[GBB]

I am working with an audiologist for tinnitus councelling and she keeps telling me that the severe tinnitus is only that way because of my distress.

Fuck that.

 

[Orions Pain]

I saw my psychiatrist again yesterday. It is a waste of time, but you know... everyone screams GET HELP, GET HELP (e.g. my family) when you say that you are suffering so badly you just want to die. I went to appease them, not because I thought there is actually any help. Psychiatrist agrees I am not depressed anyway, and the only help he can offer is additional sleeping pharmaceuticals.

Anyway, reason for my post... I told him about my plans for Pegasos. I was led to believe before we began our relationship that what was said was said in confidence.

Haaaaaaa, not entirely so. He didn't mention any disclaimers. It turns out that he has to file a report (can't remember who to) for my VAD plans because the health system and government are all about preservation of life. He says they can cancel my Goddamn passport. I told him he would leave me with no option other than to throw myself in front of an express train, and their 'preservation of life' ideology is not as humane as they congratulate themselves for.

I self-discharged on my way out.

Oh, and I spoke to my tinnitus counselling audiologist this week. It was our second session. She says there is no such thing as worse or worsening tinnitus, only a shift in our perception of it. I could have choked. The victim blaming and gaslighting that goes along with having this condition is absolutely unreal. I'm discharging from that "get help" service as well.

Every part of this story is just... beyond words. I'm angry for you. That's all I can really say. I'd love for one of these professionals to spend a week with mild tinnitus, followed by a week of extreme multi tonal fluctuating reactive tinnitus and then tell us how it's all about perception and our attitude. I'm so sick of the medical field not recognizing that it's a spectrum and tinnitus is absolutely not the same for everyone.

 

[tpj]

I saw my psychiatrist again yesterday. It is a waste of time, but you know... everyone screams GET HELP, GET HELP (e.g. my family) when you say that you are suffering so badly you just want to die. I went to appease them, not because I thought there is actually any help. Psychiatrist agrees I am not depressed anyway, and the only help he can offer is additional sleeping pharmaceuticals.

Anyway, reason for my post... I told him about my plans for Pegasos. I was led to believe before we began our relationship that what was said was said in confidence.

Haaaaaaa, not entirely so. He didn't mention any disclaimers. It turns out that he has to file a report (can't remember who to) for my VAD plans because the health system and government are all about preservation of life. He says they can cancel my Goddamn passport. I told him he would leave me with no option other than to throw myself in front of an express train, and their 'preservation of life' ideology is not as humane as they congratulate themselves for.

I self-discharged on my way out.

Oh, and I spoke to my tinnitus counselling audiologist this week. It was our second session. She says there is no such thing as worse or worsening tinnitus, only a shift in our perception of it. I could have choked. The victim blaming and gaslighting that goes along with having this condition is absolutely unreal. I'm discharging from that "get help" service as well.

This made me so angry. Bloody disgraceful conduct from people who are supposed help and support you.

 

[DaveFromChicago]

To AliasM:

When I saw a psychiatrist I had to be exceedingly careful not to broach in any way the slightest suicidal ideation; in the State of Illinois he could have had the State Police forcibly sequester me for three days in a Mental Hospital Ward for placement under observation.

I realized that they really don't care if you commit this "Final Solution" act; their sole concern is that they remain free of any liability or malpractice exposure.

Instead of a gentle, nonviolent method of termination, they don't care if you are thereby compelled to employ a method that will be grisly and cause lifelong PTSD shock for those who discover you.

Psychiatry is still riddled with insensitivity that approaches the various wanton cruelties applied in the 19th Century.

 

[Chinmoku]

I said it many times: when quantitative methods, adequate sensors and adequate modelling will make brain science really a science, psychiatry of this era will be seen as we see bloodletting now.

@AliasM, I'm sorry you got such a combination of psychiatry/audiology "professionals", the worst of the worst.

If it is any consolation, they have been much nicer with me but they couldn't do anything for me either, so in the end I have been left on my own. Either way they can't help us. Threatening to seize your passport, however, is really crazy.

 

[Adrifr]

Hi! Sorry for my English. My story is so dumb and crazy that I don't know where to start... I had fullness in my right ear and Tensor Tympani problems in my left ear, due to an incompetent ENT that gave me a nebulizer 3 years ago. The problems disappeared 6 months later (except for a mild fullness).

Then everything came back 5 months ago, so my mental health was falling apart. Plus this is the year I wanted to become a professional musician. So I began to drown into depression.

One month ago I started to have a mild 2400 Hz tone. This + all the ear troubles before caused me to, in a fit of rage and fear, punch the walls and slap my ears (which was so dumb). I'd rather had done a Van Gogh cutting... Immediately, the tinnitus was louder, and also joined by another very high frequency tone.

Then, yesterday, I had the stupid idea of doing a hearing test with earbuds. Because I felt I had lost some high frequencies.

This was the test I did:

https://www.szynalski.com/tone-generator/

Since I didn't hear at 12000 Hz and above in the right ear (I could hear fine in the left ear), I put the sound at the very highest level (on my phone and on the computer), only in my right ear, isolating my left ear (the volume was unbearable for the left ear), despite a disclaimer I didn't read on the site. Maybe it was more than a hundred dB. That was the other dumbest thing I did. For five seconds, I put an extremely loud sound to my right ear and now the high frequency hiss is quite loud and masks my 2400 Hz tone... I hope it's not irreversible.

I'm on Prednisolone for the moment, maybe it will help. I'm looking for mental help as soon as possible, to defocus and to restart my life with all my issues.

I have ideations about ending my life, but for now I prefer to talk. I hate my story and what I did to myself... But all those ear issues are killing me. I don't know if I will be able to enjoy music anymore.

I'm guilty for my tinnitus, but I hated my ear issues even before. I hope the high pitch sound will fade.

Thanks for reading.

 

[Matchbox]

Well. I can't be totally sure but I think I've improved somewhat.

Not "as" suicidal.

Still have humming and morning droning but it IS lower in volume.

I've noticed routinely that using Ginkgo biloba turns things into a louder ringing but less droning, and Betahistine IS definitely helping with the thudding in high repetitive doses (6x day 16 mg).

Giving Mirtazapine, in a small dose, a try after another SSRI to help sleep (I don't know if the improvement is down to the fact that I'm getting more sleep now).

GABA drugs do work for distortions initially but I'll have hell to pay that night or following day. Coming off them causes large spikes in thumps / wavering.

Exploding Head Syndrome STARTED on Zopiclone (I use it occasionally but maybe I build tolerance very fast), and I can reproduce it by USING it again, so obviously there's some inhibitory pathway that's being turned down from the drugs. Ironically the same drug reduces distortion (as does Kava Kava), tinnitus, and can nuke new tones. Thankfully, it seems much less if not gone after being off of Zopiclone for a week.

I literally wanted to fucking die waking up to BOOMS at 4 am when I had to work.

Best to let it try to rebalance regulation with minimal drugs.

Nothing else has changed. Distortion and tinnitus still sucks a lot, but sleeping well is so key to not wanting to jump into traffic.

 

[GBB]

My vision has been blurring slightly so I tried reducing Pramipexole and Keppra this week slowly, and actually my vision became sharper, but my tinnitus today is agony. In light of this I'm not sure if it is withdrawal or just what my natural tinnitus is like, but god damn. I'm surprised more people aren't dead from this on days like this, but I suppose it's a very rare condition in the first place.

In this sense I don't really think I've improved at all in 10 months. If nothing is to change, I can definitely say I'd prefer to be deaf, though I appreciate that is not an actual choice I can make.

I need peace.

I am a biological organism. Disruption to this extent cannot carry on without secondary physiological consequences.

Meds will probably reduce in effectiveness over time or create adverse side effects. I always took the gamble that okay maybe it will buy me a year but surely I'll be a bit better by then, I'll have figured out something else or made some other breakthrough, but I'm losing that bet, it seems like.

If anything it will provide more data for this community. I can't remain at this level without trying new drugs.

EDIT: Just took a shower without earplugs and my entire auditory field is a multitonal clusterfuck.

I feel nauseous and like I'm going to break down. How is there NOTHING that modern science can do for this?

Can anyone point me to a severe reactivity success story? I feel like I'm honestly back at day 1.

 

[dan]

I have a wine glass hum to everything, and a fluttering sound.

In 2 years you will be habituated.

This type of sound is possible to habituate.