Does anyone here have hyperacusis?

[hopelessanddisabled]

I have this really bad. It has destroyed my entire life as a musician, not only can I not perform anymore but I cant listen to music either. I'm housebound because any moderate noise exposure permanently worsens my condition and pain. It's the sole reason I want to ctb.

 

[lugerepair]

That sounds really awful. Really sorry to hear you're going through this. I love music, I can't even imagine how hard this must be. I'm more sensitive to sounds than the average person due to autism, but I don't think it's anywhere as bad as what you have.

 

[hopelessanddisabled]

I should add, I also literally lose hearing if I am exposed to a sudden loud sound. This is medically verifiable. Noone has a clue what's happening to me, at all, doctors are just pretty much clueless and some are uncaring and have never seen anything like this before. My pain is neuropathic and theres not one millisecond where I am free from it. i also now have visual snow syndrome really bad too. with no coping mechanisms, and with things like travelling in cars and being in cities worsening my condition permanently and a family that doesnt *get* it I dont have any options other than ctb.

 

[mini_weeny]

I should add, I also literally lose hearing if I am exposed to a sudden loud sound. This is medically verifiable. Noone has a clue what's happening to me, at all, doctors are just pretty much clueless and some are uncaring and have never seen anything like this before. My pain is neuropathic and theres not one millisecond where I am free from it. i also now have visual snow syndrome really bad too. with no coping mechanisms, and with things like travelling in cars and being in cities worsening my condition permanently and a family that doesnt *get* it I dont have any options other than ctb.

Hiiiiii H sufferer here. This disease is the worst thing ever, I cry many times a day all days. I think about suicide non stop, I've been homebound for a year too, I dream of my old life and like you I miss music so much. I want to ctb for the same reason, I can't live without freedom, we are like birds in cages. I fear the day when the pandemic is over and we are still locked down in our homes .. forever afraid of sound. :(,,,, I'm in a Facebook and what's app group it helps in those days where there's no one. Do you have tinnitus as well??? You can pm anytime you want to talk
I know of 2 other ppl that are here and have it too.

 

[Wrennie]

My brother has it as a complication from Lyme Disease & it is preventing him from going out with friends and enjoying his life. You aren't alone... this disease is life-altering and devastating and there are many others suffering in silence. Depending on the severity of your case I know of a surgery you could potentially undergo to improve or even eliminate your symptoms altogether.

 

[hopelessanddisabled]

Hiiiiii H sufferer here. This disease is the worst thing ever, I cry many times a day all days. I think about suicide non stop, I've been homebound for a year too, I dream of my old life and like you I miss music so much. I want to ctb for the same reason, I can't live without freedom, we are like birds in cages. I fear the day when the pandemic is over and we are still locked down in our homes .. forever afraid of sound. :(,,,, I'm in a Facebook and what's app group it helps in those days where there's no one. Do you have tinnitus as well??? You can pm anytime you want to talk
I know of 2 other ppl that are here and have it too.

Yes I have tinnitus as well, 20+ distinct tones, but that no longer bothers me except the reactive tinnitus that beeps like morsecode extremely loudly when there is any kind of noise. Masking is impossible. But the hyperacusis and severe visual snow are the worst things I have. I lurk tinnitustalk like a ghost all the time.

 

[mini_weeny]

Yes I have tinnitus as well, 20+ distinct tones, but that no longer bothers me except the reactive tinnitus that beeps like morsecode extremely loudly when there is any kind of noise. Masking is impossible. But the hyperacusis and severe visual snow are the worst things I have. I lurk tinnitustalk like a ghost all the time.

I used to lurk the Hyperacusis group but it makes me more scared so I now avoid it . If you want to join our Facebook chat just pm @Buffy5120

 

[Buffy5120]

I have this really bad. It has destroyed my entire life as a musician, not only can I not perform anymore but I cant listen to music either. I'm housebound because any moderate noise exposure permanently worsens my condition and pain. It's the sole reason I want to ctb.

Hey you are not alone I got mine from a 2 hour mri. Ctb seems to be the only option there are drugs that are supposedly supposed to help but eta is approximately 2 years

 

[tryingtoescape]

I have tinnitus and hyperacusis.

 

[the_final_countdown]

I have the tinnitus and accompanying vertigo, along with a host of other physical symptoms.

For whatever reason, I've suddenly developed dry eye too. And it's just so frustrating.

I really don't want to spend the next few decades of my life like this.

It's absurd but if I'm ever diagnosed with cancer, I'll let it take its course, apply for hospice, get me some of that sweet morphine, and try to get through it.

I'm not really living. Nor do I want to. And I'm not particularly bitter about it because I just don't want to suffer anymore. I just want it to end...