- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
Yes, I developed it again. I'm not on any meds. Meds don't touch my tinnitus, never have, not even in milder times, so what's the point. I just wait for death now, but death won't come easy.Do you also have hyperacusis?
For me, hyperacusis kicked in April and one month ago it got much worse. Tolerance has dropped and I am not sure how to handle it. My tinnitus is pretty bad as you know, but it seems that I accept much quicker the new tones, possibly because I perceive already numerous ones. However I can't deal with the sensitivity. It's impossible and at times physically painful. Sigh...
What meds are you on?
Whenever I think of "future help for tinnitus" the ATA does not even cross my mind. They're about as useful as my ENT was imo. I remain hopeful but I won't be surprised if the majority of that money goes right into someone's pocket.I wouldn't put much faith in the ATA. Bunch of hot air in my opinion. I'm sure they will fund some stupid study with the money on coping mechanisms or something dumb.
They are absolute morons in my opinion.
I asked them very general questions when my hell started and they gave the most vague, worthless responses.
Better off donating to actual research.
Yeah man. An absolute disgrace. These so called professionals are a fucking joke. CBT and Acceptance and Commitment Therapy.Whenever I think of "future help for tinnitus" the ATA does not even cross my mind. They're about as useful as my ENT was imo. I remain hopeful but I won't be surprised if the majority of that money goes right into someone's pocket.
They seem to know close to nothing about living with tinnitus. Our local tinnitus association made a leaflet about tinnitus, which is correct about potential causes and so on, but has a section of advice at the end with the clear intention to help to distract from tinnitus, which is fine, but it's so ridiculous and makes my blood boil with advice like this: "treat yourself: go to a hairdresser or a theater; try to whistle a song; laugh, have fun, watch a comedy; etc."Yeah man. An absolute disgrace. These so called professionals are a fucking joke. CBT and Acceptance and Commitment Therapy.
If they could stop the noise I would imagine 99% of this forum would become undepressed.
They certainly didn't do anything to change my opinion of them from decade ago... useless!When ATA's Tinnitus Today magazine had an article that treated Julian Cowan Hill as some sort of expert I entirely lost all respect and hope for usable information from them.
Insulting that they seem to ignore extreme tinnitus too, paired with hyperacusis, which makes it impossible to go to a hair dresser or listen to music without a spike.Yes, when I'm suicidal because noises torture me 24/7 with minimal sleep, I'm really in the mood of laughing a lot and having fun, I should have just thought of that.
Oh my gosh Dan...Yes, I developed it again. I'm not on any meds. Meds don't touch my tinnitus, never have, not even in milder times, so what's the point. I just wait for death now, but death won't come easy.
I can't believe I suffered so much with ONE tone. Now this level of 10 sounds each, puts that previous level to bed.
Me too Chinmoku.All I can try to do is to agonizingly hold on a little longer, how long I don't know.
I hate this affliction so much. Some of us just keep getting worse no matter what. The fact that nothing can touch it, in order to improve even a tiny bit... it's beyond comprehension.I continue to worsen. No noise exposure. No ototoxic meds. I don't see myself making it through the year. All hope is dead.
I wasn't aware of that. So the ATA is a circus. Julian Cowan Hill an expert? They crossed the line.When ATA's Tinnitus Today magazine had an article that treated Julian Cowan Hill as some sort of expert I entirely lost all respect and hope for usable information from them.
This isn't unique to tinnitus, and finding this kind of comfort isn't something we should feel shame about. Whatever gets us through the day.The thought of suicide is the only thing that comforts me. I cannot continue living like this.
There's a big difference between suicidal ideation, being actively suicidal (planning phase, pragmatics, etc), actually attempting suicide, and succeeding."The thought of suicide is a great consolation: by means of it one gets through many a dark night."
This makes me so angry. There are so many selfish assholes who aren't generous without getting something out of it themselves. I was almost in this situation myself.The friend who offered me shelter is showing some not great sides to him and my autonomy, among other things, are being threatened. But my life is in his hands and I have no choice but to comply with him. I can't use phones or deal with sirens in case an emergency happened. I feel trapped. It would be suicide to go home.
The clock is ticking. And I don't know if I'll get to find out if I'll be one of the lucky cases of hyperacusis that recover. It doesn't seem possible at this point.
Most neuros accept a CT scan as an alternative. CT scans are safe (aside from radiation). Can you just get that?My neurologist seems to have given up on me since I refused a brain MRI.
You can stay at my place, I dare not make any sound louder than a footstep in my house.The friend who offered me shelter is showing some not great sides to him and my autonomy, among other things, are being threatened. But my life is in his hands and I have no choice but to comply with him. I can't use phones or deal with sirens in case an emergency happened. I feel trapped. It would be suicide to go home.
The clock is ticking. And I don't know if I'll get to find out if I'll be one of the lucky cases of hyperacusis that recover. It doesn't seem possible at this point.
Absolutely true.Welcome to the "I thought I had it bad" group...
A few years ago I was hoping a pill would give me 50% relief... today I'm hoping a pill would get me back to that level where I was hoping to get 50% relief... wtf?
Sadly no.This makes me so angry. There are so many selfish assholes who aren't generous without getting something out of it themselves. I was almost in this situation myself.
Is there anywhere else you could go?
A hyperacusis house is a great idea honestly.You can stay at my place, I dare not make any sound louder than a footstep in my house.
Of course! He suffered a great deal.Anybody remember @Geo?
I am trying to get disability but I live in Canada.Sadly no.
I've known him for years and I've never seen this side of him. It's scary. I'm 15 hours away from home. Most of my friends live back in my noisy state in noisy areas. I wish I had the means to live on my own. Trying to get disability for this seems impossible.
A hyperacusis house is a great idea honestly.
After seeing what @Zugzug has gone through it's really demoralizing. I've actually applied for mental health related disability in the past but of course got denied. I didn't bother fighting because I thought I had to suck it up. But it ended up screwing me up even more.I am trying to get disability but I live in Canada.
What I have learned or what is my strong impression is that this is universal: no matter where you live, you will not get Disability for tinnitus. Tinnitus can only be given as a reason or condition if you are a military veteran.
So, you need to describe your mental condition and what tinnitus does to you mentally, so what restrictions you have from it etc. It seems to be a universal issue no matter where you live, Canada, USA, etc. although some countries might be more open to *those* conditions (UK, maybe?) because even mental illness is not easy to use as a reason. Initial and multiple rejections or denials are common.
It's funny (not really) to me the way humans have an inability to predict patterns of injustice and get out in front of it all. For example, take psychiatric problems. For centuries, anxiety and depression were not recognized as real health problems. It was believed that since everyone deals with anxiety, the people with "disorders" were just exaggerating.After seeing what @Zugzug has gone through it's really demoralizing. I've actually applied for mental health related disability in the past but of course got denied. I didn't bother fighting because I thought I had to suck it up. But it ended up screwing me up even more.
I was able to hold a very limited and specific job with minimal people contact, then of course lost it because of all this. That was before I got tinnitus or hyperacusis though. Ironically they let me go because I apparently scared someone into thinking I had COVID-19 due to my breathing issues. I'm wondering if those conditions and my past attempts will help me in this case. But it also doesn't help that I can't seek any sort of medical care right now due to only having valid insurance in my home state, and not being able to speak anyway. Not like I'd even want to.
The UK, as far as I know, is very lax with disability. A friend has a friend who is on full benefits and housing for dyspraxia, which isn't even recognized as a disability in the US. I really envy people there.
I am really tempted to play up the mental health aspect to the point of acting crazy but I'm also afraid that in doing so it may reinforce the idea to these people that tinnitus and hyperacusis are mental issues. Should I do a bit of both, or just completely omit the "yeah noises paralyze me and give me nerve pain and I haven't bathed in weeks" part of it? Or rather completely attribute those conditions to "anxiety"?
(I'd honestly love to write "tinnitus and hyperacusis are horrible, recognize these as disability already you stupid f*cks" in the booklet.)
Another fear I have is being forced to get mental health care or be on medication just to make some disability people happy. I react poorly to most psychiatric meds, and I've been on a lot. Do I really need to jump through these hoops to appease these people? I assume so.
Best of luck with applying and I hope it doesn't take you years.
I've come back from crazy hyperacusis a couple of times, and going through another spike right now. I see your hyperacusis started in December. You need to give it 6-8 months. It's a long time, but it will get better as long as you don't have new traumas, I guarantee it!I'm honestly offing myself this weekend. Life just isn't worth it. I'm just putting this out there so people know how bad hyperacusis can get.
My advice and answers to your questions:After seeing what @Zugzug has gone through it's really demoralizing. I've actually applied for mental health related disability in the past but of course got denied. I didn't bother fighting because I thought I had to suck it up. But it ended up screwing me up even more.
I was able to hold a very limited and specific job with minimal people contact, then of course lost it because of all this. That was before I got tinnitus or hyperacusis though. Ironically they let me go because I apparently scared someone into thinking I had COVID-19 due to my breathing issues. I'm wondering if those conditions and my past attempts will help me in this case. But it also doesn't help that I can't seek any sort of medical care right now due to only having valid insurance in my home state, and not being able to speak anyway. Not like I'd even want to.
The UK, as far as I know, is very lax with disability. A friend has a friend who is on full benefits and housing for dyspraxia, which isn't even recognized as a disability in the US. I really envy people there.
I am really tempted to play up the mental health aspect to the point of acting crazy but I'm also afraid that in doing so it may reinforce the idea to these people that tinnitus and hyperacusis are mental issues. Should I do a bit of both, or just completely omit the "yeah noises paralyze me and give me nerve pain and I haven't bathed in weeks" part of it? Or rather completely attribute those conditions to "anxiety"?
(I'd honestly love to write "tinnitus and hyperacusis are horrible, recognize these as disability already you stupid f*cks" in the booklet.)
Another fear I have is being forced to get mental health care or be on medication just to make some disability people happy. I react poorly to most psychiatric meds, and I've been on a lot. Do I really need to jump through these hoops to appease these people? I assume so.
Best of luck with applying and I hope it doesn't take you years.
Yeah, you have to take the prescription and say you're taking it and come back for a refill, do that a few times, then say you have terrible side effects/doesn't do shit for tinnitus, and you're home free - you followed your doctor's orders and it didn't work, hence you're disabled with poor prognosis to improve. You also need a psych evaluation, where the shrink will just write you off as untreatable.My advice and answers to your questions:
Yes, to both - Play up the mental aspect but whatever you say, you have to show that you tried to obtain "help" - meaning meds and doctors/specialists - psychologists, counselors, psychiatrists etc. who will support you. That's my problem right now.
I felt the same way as you (I have tinnitus so I am not "going to act crazy"). I have a physical condition, invisible yes and it contributes to mental anguish so anxiety and depression being part of that. But, the disability "doctors" and "evaluators" don't care. They don't understand tinnitus and don't care that they don't. They follow what your doctors and specialists write down about you. They are your "support network" if you will.
So, 'act crazy' or whatever. Keep track of what your day is like and write it down. Give it to your doctor.
NO ONE listens to us so does it really matter if they associate tinnitus and mental issues together? You want disability and the system is unfair and that's the situation in multiple places and multiple countries. Yeah, good for the UK for not making it unnecessarily difficult for people who have severe forms of tinnitus.
My doctor thinks a medication will help and doesn't care much about my concerns (that it won't work or that it may be ototoxic). I made the mistake thinking it would be okay to have this position. It is being counted against me.
So my advice is, agree to everything and anything (no MRIs maybe the only exception) and it's up to you whether you take a medication that was prescribed to you. I am not telling you what to do there.
But, my sentiments and attitude is they don't care about tinnitus and what it does to you or about possible consequences of taking multiple medications and I mean to your tinnitus (notwithstanding other side effects) so why be their obedient tool?
I will say I took the medication and it didn't work. How often do meds work for severe tinnitus sufferers? Does talking to another human being (on the phone, nowadays) reduce your tinnitus? No. It does not.
But, I would do whatever they want if it means getting disability. You have to explain what tinnitus does to you, mentally speaking - how it prevents you from doing routine things and how it prevents you from functioning normally.