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Buffy5120

Death is vital
Mar 19, 2020
614
I have really bad tinnitus too. Also appeared during a stressful period but from an acoustic trauma. Loud, can hear it over the freeway but my huperacusis has worsened so I can't leave the house nor use noise to mask
Yup which do u think is worse ur H or T?
 
Desdemona

Desdemona

Member
Oct 14, 2020
88
Yup which do u think is worse ur H or T?

They both equally suck. If I only had one of the two I'd still be miserable. Ear pain is horrible and H makes my tinnitus more reactive. Sometimes I think not having T would be easier because I could just wear ear plugs and not be miserable but 24/7 but then I think if I just had T and no H I could at least try to mask it and not worry about pain

I think H is worse if the T isn't reactive
 
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everbuzzingone

everbuzzingone

Member
Nov 6, 2020
26
I think both are equally as bad depending on the severity of tinnitus. For instance, mild tinnitus that can only be heard in absolute silence and masked by just about every environmental sound, doesn't count. I wouldn't even consider that tinnitus.

Hyperacusis without tinnitus is awful. Severe tinnitus without hyperacusis is awful. All of these hearing issues are awful. They ruin lives of so many people yet hardly anyone knows that they exist.

@Buffy5120 I'm holding out for FX-322 results in March/May of next year. I feel as if we know that it has positive results for T & H that it will make the suffering at least a little more bearable while waiting for release of a drug that could literally save lives (in my case, at least.) I do have some good days where the tinnitus, while present, isn't as sharp or piercing and my whole attitude towards life changes and gives me a little bit of hope. But then the next day it goes back to a hell piercing level and I'm back to thinking about CTB.
 
Desdemona

Desdemona

Member
Oct 14, 2020
88
I think both are equally as bad depending on the severity of tinnitus. For instance, mild tinnitus that can only be heard in absolute silence and masked by just about every environmental sound, doesn't count. I wouldn't even consider that tinnitus.

Hyperacusis without tinnitus is awful. Severe tinnitus without hyperacusis is awful. All of these hearing issues are awful. They ruin lives of so many people yet hardly anyone knows that they exist.

@Buffy5120 I'm holding out for FX-322 results in March/May of next year. I feel as if we know that it has positive results for T & H that it will make the suffering at least a little more bearable while waiting for release of a drug that could literally save lives (in my case, at least.) I do have some good days where the tinnitus, while present, isn't as sharp or piercing and my whole attitude towards life changes and gives me a little bit of hope. But then the next day it goes back to a hell piercing level and I'm back to thinking about CTB.

Mild tinnitus would almost be relaxing at this point. Severe tinnitus destroys lives.
 
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Cherrypea

Cherrypea

I remember when all this will be again
May 3, 2020
414
I'm sorry to hear about the tinnitus, I know how difficult it can be to deal with hearing/sound issues too. Whilst I can't imagine never being able to experience silence, I have misophonia and I think that's the main reason I developed depression too - it's the constant feeling of being on edge, always anxious, that makes it so hard.
I reckon you're more at risk of developing depression if you have tinnitus as well - a lack of effective coping mechanisms would no doubt cause hopelessness and emotional distress

Have you had any luck speaking to a dr about the tinnitus?
I'd recommend trying to listen to white noise to help distract yourself when it gets bad, if you haven't already. I normally use brown noise and I know it doesn't fix the issue, but it makes it a bit more bearable :/
My eldest daughter was diagnosed with misophonia a couple of years ago. She saw a private therapist in the UK who I can recommend if you like, depending on whereabouts you live or she may be able refer you to someone else, we found there weren't many therapists who specialised in this. It wasn't cheap but definitely helped my daughter a lot.
 
elfgyoza

elfgyoza

Cursed
Aug 5, 2019
326
My eldest daughter was diagnosed with misophonia a couple of years ago. She saw a private therapist in the UK who I can recommend if you like, depending on whereabouts you live or she may be able refer you to someone else, we found there weren't many therapists who specialised in this. It wasn't cheap but definitely helped my daughter a lot.
I didn't know you could have an actual diagnosis, I was still under the impression that it's not listed on the DSM/ICD? I have looked for therapists online, but unfortunately they all seem to be in the south. Thank you though
I did talk to a crisis team psychiatrist once about it, but all he did was refer me for an autism assessment. He did seem to know what it is at least. I also explained it to my local mental health nurse last week so I'll just see what comes of that. She'd never heard of it.
 
Cherrypea

Cherrypea

I remember when all this will be again
May 3, 2020
414
Yes we are in the south and not many people have heard of it. In retrospect I do think I should have pushed for the autism assessment with my daughter as it can be linked. It was a private psychologist who made the diagnosis so I think they follow their own rules sometimes.
 
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Brink

Brink

Exhausted. RadHomo.
Feb 11, 2020
625
I'm sorry for your suffering @everbuzzingone. Wishing you the strength to get through till next year for your results.

I know @Susan Caswell suffers quite badly with this too. Maybe you two could connect if you haven't already. x
 
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Buffy5120

Death is vital
Mar 19, 2020
614
I'm sorry for your suffering @everbuzzingone. Wishing you the strength to get through till next year for your results.

I know @Susan Caswell suffers quite badly with this too. Maybe you two could connect if you haven't already. x
Susan is in the same facebook group that i am in as well...have any of you heard about the new treatment fx322 its supposed to help stop T
 
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Susan Caswell

Specialist
Feb 25, 2019
316
Susan is in the same facebook group that i am in as well...have any of you heard about the new treatment fx322 its supposed to help stop T
Can you message me buffy or send me a private message on Facebook is there anything that helps you anything that takes it down mine never goes down but how its louder and louder i just dont know i cant stay like this i just cant take the noise low tone deep roaring its cruel if i could just stand it like i did at the start at least but the hyperacusis is horrific everything is deafening but ive got so ill with anxiety ive not eaten for 10 days surely i will die soon just cant believe it i was so damn healthy and well living a wonderful life with so many plans i want to die for peace and just dont know how but surely not eating and drinking i will and soon its tragic just wish it would stop and let me get well xx
 
everbuzzingone

everbuzzingone

Member
Nov 6, 2020
26
@Buffy5120 yeah I've been following FX-322 pretty closely. Right now it's only speculation that it will help cure T but we should know more when they release the phase 2a results spring of 2021.

@Susan Caswell I completely understand what you're going through and how you feel. My tinnitus is absolutely awful as well and I think about the same thing you do a lot of the time. Please know you are not alone - severe tinnitus and hyperacusis are some of the hardest things to deal with physically and unfortunately it isn't recognized or accepted by most people. Stay as strong as you can and have hope that there might be treatments to get rid of these monsters within the next few years.
 
B

Buffy5120

Death is vital
Mar 19, 2020
614
@Buffy5120 yeah I've been following FX-322 pretty closely. Right now it's only speculation that it will help cure T but we should know more when they release the phase 2a results spring of 2021.

@Susan Caswell I completely understand what you're going through and how you feel. My tinnitus is absolutely awful as well and I think about the same thing you do a lot of the time. Please know you are not alone - severe tinnitus and hyperacusis are some of the hardest things to deal with physically and unfortunately it isn't recognized or accepted by most people. Stay as strong as you can and have hope that there might be treatments to get rid of these monsters within the next few years.
I thought it was supposed to help with Hyperacusis too?
 
puppy9

puppy9

au revoir
Jun 13, 2019
1,238
I'm sorry that this is robbing you out of your life. I have no right to comment here because I don't feel your physical pain.

I found a link from reading some news online and I found this site. I know it'll most likely help you guys. But I wanna share it anyways.

 
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