Suicidal

Thanks Pete. Good luck with your appeal.

 

All I know is without a psychiatrist in your arsenal it is like playing chess with 1 Rook.

I don't know what to tell ya buddy. You def need a family doctor sympathetic to your cause because that's the backbone of your claim. I wish you success.

 

Are you on disability?

My doctor wasn't really helpful or sympathetic early on (well, he thought he was) but I kept explaining my situation and condition - visiting several times (pre-pandemic). Eventually, he wrote a letter of support (although, still lacking, imho), so it was better than his initial notes to disability. I was still denied twice and on appeal. This is my last chance and if declined again, you start all over again. I don't want to imagine...

 

Thanks. I hope the Magnesium helps you.

 

Agree with this. From what it seems, they are not in it because of a profession for helping people, but rather family expectations or money. You need to have an analytical and logical mind to be a doctor, which leaves bedside manner--and nuanced thinking for patients who happen to be outliers--a lot to be desired.

I hope you can succeed with this PeteJ. I've read your posts from the past regarding disability, regarding the importance of the mental health aspect. Do you have a lawyer all set up? Are they supportive?

Also yeah, having a lot of people "in your corner" is helpful. I don't know if you've been doing it, but I've been trying to pull out all the stops getting in on things like DMH just to have a bigger support network. I do fear that without a doctor's final word, since that's all people seem to give a shit about, it won't mean much, but at least having more supports and people potentially being able to find someone willing to help would be good.

 

My Canada Day/4th of July barricade.

 

Fuck! Not looking forward to 4th of July.

 

Tinnitus loud and whistling. Can hear someone opening a beer bottle in the kitchen from my bedroom. Thanks TRT, you sure are helpful.

I told my audiologist I was getting worse and she said it was a positive. Why?

I spoke to another person who did recover from TRT and they claimed it only helped them, never made them more sensitive. And that hearing protection made it worse. Well, it's the opposite for me. And many others. Why won't the people who get worse with noise and better with quiet be believed?

Can't get a straight answer either. I asked, why is me getting worse 'a good thing'? But nothing. I hate this goddamn industry, and I'm sick of living in the Twilight Zone where everyone thinks I'm crazy. Do I need to make my already sub 40 dB LDLs even worse for 6+ months only for people to be satisfied, for me to write it off and give them the "told ya so"?

 

TRT is such a scam, you fell for it.

 

I didn't fall for it. I was always skeptical but I have no other options. And trying this treatment is the only way to tell disability that I've at least tried everything and that I can't get better. I have severe loudness hyperacusis so my chances were a bit better than pain hyperacusis cases. But I just clarified with the audiologist today and she said that if they are making me worse, I should stop.

I lost no money, they were fully covered by insurance.

I believe sound therapies, not always just TRT, can help some cases of hyperacusis. I don't know if I will try other approaches, because it seems my brain just does not like sound period. I want to believe in central gain models, I want to believe this "overprotection" myth, but all evidence regarding my own case stacks against it. There is no hope.

 

Sorry you’re getting worse. I had to do the lowest possible sound and maybe 10-15 minutes at a time in the ears and maybe an hour on phone. Tinnitus was worsening for a bit, then started to improve quite a bit. Then COVID-19 struck and well, we will see, it’s squealy again now.

I do believe everyone is different.

 

I haven't checked your thread in a bit, I'm glad your tinnitus is improving but I'm sorry you got COVID-19 and hope there's no lasting bad effects. I know it can be killer on the ears. I really want to learn about more 'getting worse before getting better' cases and believe, but at the same time it's so hard to hold onto this when my heart beat is so loud in my ears now and I'm losing more tolerances every day.

 

I don’t know about no hope, but it’s hard as hell to find what helps you while you get worse while attempting different methods. I understand how discouraging it is. That and life does not let up.

 

I understand, it’s good to hold off for now.

 

Indeed. My audiologist also thinks I should look into other underlying medical causes, but it's so difficult to do so when I have to wait for so long, drag my ass to appointments while getting worse from setbacks, and doctors just shrugging their shoulders in the end due to being unfamiliar with hyperacusis or still thinking this is all in my head. It's maddening. Still no full analysis of my nervous system, and without an MRI, who knows what is possible?

And I hate being stuck in the middle between teams "you aren't thinking positively enough" vs "you fell for the TRT scam" too, both online and offline. These comments hurt from both sides. What else can I do? If there was no loss here, I wouldn't care, the risk of going through the trials just to come out worse in the end is terrifying. But me not trying at all just convinces others I'm a faker who wants to remain miserable and uncured.

 

You’re not doing wrong at all, you’re trying. Just because things aren’t helping now, it doesn’t mean it won’t help later ya know? Just need to keep pushing forward and somehow hope things don’t worsen at the same time. I’m in the same boat.

 

Us severe folks... we’ve inherited the most bleak of bleaks; the most painful thing imaginable — eviction from this planet. Nature has ordained that we no longer fit in with Earth, a place we’ve always belonged. But it doesn’t kick us out. It begrudgingly allows us to stay. We’re like that kid from gym class — the final one who’s selected to be on a team, who wasn’t really “picked” at all, but was rather included out of necessity; a shameful moment that captures what our peers really think about us and our place in the universe, our worth and appeal, and what we have to offer. We feel unwelcome. That sense of belonging has been challenged by the fact that we’re no longer compatible with this creation; when everything’s a struggle and we can barely get by; when just trying to do the simplest of things is a feat in and of itself. We’re like extraterrestrials now; aliens on a foreign planet. Things familiar are now abstract and forgotten, the outlook of life abysmal and dark. Happiness is an emotion that’s out of reach, a memory of bygone times. Hope is a dream, not a promise, but it’s all we got. We can only hope - depending on beliefs - that god or nature will enable us to once again take part in this world; to once again be granted residence to the only home we’ve ever known.

 

How long does noxacusis take to improve? Years?

 

I’ve had it for over a year now, I just keep getting worse. Currently can’t leave my house, and have to have earmuffs 24/7. I can’t drive, and I can only have conversations for no more than 20 minutes. There are people in even worse situations.

 

Jesus.

I just read you have a barking dog and that you get potentially exposed to barks. Your noxacusis can't be that bad if a dog bark at close range doesn't kill you.

 

Oh my noxacusis is bad. I have 2 dogs, the big one barely ever barks. The little one barks a lot but I never let him in my room. When I hang out with my dogs they almost never bark, and when they do, it’s because they are outside chasing squirrels and I’m inside the house. I also have delayed pain, a dog can bark and I could be good at the moment, but later on the day I’ll be paying for it. Usually with excruciating stabbing pain.

 

Not to minimize your pain but if you can stand a dog bark outside your door and not be worse immediately, your noxacusis is about moderate level. Having said that, if you want to get better, get rid of your dogs. I'm saying that because noxacusis is cumulative.

 

I wear double hearing protection inside my house, I am completely housebound. I literally just told you I have delayed pain, so if they have to bark anywhere near me, even with double protection I get a nasty spike. I have constant stabbing pain all day, and being housebound is literally the definition of severe. Like I said, the dogs barely come in the room, and when they bark, they aren’t in the house and bark from a distance, we have a huge yard. Again I wear double hearing protection inside my house.

I know it’s cumulative, I’ve had it for over a year now.

 

Oh I didn't know you wore double hearing protection in the house, sorry.

 

Do you have any pets? I think I have both hyperacusis and noxacusis. My dog used to bark occasionally - usually outside, at other dogs if they got too close or if they were hyper and approached too energetically. Dog barks can hurt my ear or ears - even my own dog's bark. My dog also used to have, what I call anxiety attacks - she would do a sudden howl that would turn into a few barks. At least, she rarely does that now.

It's difficult to 'give up' your dog, Dan. I get to the point many times when I just want to "end things" and if someone I trust, would take my dog - would I agree and then do it (i.e. everything). My hyperacusis is really bad but it sounds like my hyperacusis/noxacusis isn't as bad as this guy's.

I can't imagine being forced to wear hearing protection ALL THE TIME - earplugs and earmuffs 24/7 or almost that often? I tend to wear earplugs more often, especially in the proximity of my building.

But, I HATE doing so. My tinnitus is - how do you describe it?: so isolated like that. I want to stab myself in the head or smash my skull in concrete or something. My tinnitus is so severe and I've been experiencing so many spikes here and there. I want to avoid problems from not wearing hearing protection but when I wear it, it's another form of torture - maybe you know what I mean?

Some others replied to a previous message of mine. I'll get to it.

 

Yes yes I know exactly what you mean brother. I'm thinking getting a cat.

 

I was thinking of a cat too. I wonder if they make noise at night?

 

They hiss when pissed, they meow when hungry or when seeing food. Sometimes they cry out kinda loud for no reason. They make clicking noises when seeing birds outside... but that’s not loud, just funny lol. They get wild hairs and randomly run into stuff and knock it down. Still quieter than dogs.

 

Although better then barking, the thing with cats is they purr A LOT, and often they get in your face and do that and also while you sleep they'll snuggle up in your face and purr. I actually got a kitten in my early days of tinnitus and hyperacusis (when my hyperacusis wasn't even as bad as now) but the purring was really uncomfortable in my ears and made my eardrum vibrate/flutter too. I found myself showing the kitten away from me, and it broke my heart because it deserved better than that, so I gave it another home.

I won't say don't get a cat, but the purring needs to be taken into consideration.

 

@PeteJ, try to WIN your appeal this time. Put max effort. Saying this because you will get retroactive pay for every month since you applied. That would add up to more than 10 grand in your case.

If you start all over again, you might be successful but you won't get that backpay.