Thanks, I'll give it a go. I already use some round plastic brushes between my teeth before flossing, and I try get the dental floss around my teeth too but that thing will help and be less traumatic.
Hi @dan, I hope you're doing more than ok.
No, I don't. I am the only fucking human being that I've come across with severe Sjogren's-based, chronic, progressive, life-altering hyperacusis. No one understands what the fuck I go through because I type so coherently and try to help people.
ANA titter - positive 1:80.
How did you know that it was auto-immune? What kind of blood tests did you need to do? Did audiograms show anything other than "normal hearing" bullshit?
He doesn't exist. It's a bit easier to accept how such awful things can happen that way, also how trivial and small people's "normal" life problems are. I wish I could worry about stupid shit again.
I saw some colleagues/friends recently and had the same reaction. They were all talking about their plans, their childrens' holidays, things going on at work. I was desperately trying to keep a straight face despite the electric scream onslaught but ended up crying a couple of times. I really hope your limbs improve. Did you get any new diagnostic results? I'm so angry that life can be so unfair, anger born by desperation.
You are absolutely right, there are unique cases like yours that are beyond horrible, so unfair. I think there are only a few other people on the forum with unique situations. You have shown admirable strength, resilience and generosity from outside but you only know how much you are suffering. I am glad at least your parents can offer some shelter in this tragedy.
I did the 4 hours thing for 5 months, it's awful.
I hesitate suggesting this as it is a heavy drug but have you tried Quetiapine? Even a small dosage of 0.125 mg or 0.25 mg can knock people out for 6-8 hours. It is often used at low dose for sleep and at that dose it is mostly an anticholinergic. For me a while back it spiked tinnitus in the good ear so I stopped but now it's bad on its own so I'm wondering whether I should try it again to survive this lack of sleep. Do your research before trying it though if you decide to give it a go. It's important to stay on a low dose but that should work for sleep.
After 17 years of being unable to live normally, I've learned that crawling into a cave in your mind and isolating is the only method to survive, for me. It's too heartbreaking to see people, friends or strangers live their normal lives.
I'm just so sorry. I don't know why ENTs don't understand that Acoustic Reflex Test, MRI, Loudness Discomfort Level Test are dangerous when living with tinnitus.
Years of workup. Repeated SSB positive blood work, as well as a high positive biopsy for Sjogren's (i.e. high amounts of lymphocyte infiltration). The audiogram is useless; I had one done at the very beginning (when my hyperacusis was 10% as bad as it is now) and it was "normal."
What are your doctors saying? A 1:80 titer is not considered very high, but could be early stages. It's interesting that your dsDNA-ab flipped so significantly from astronomical levels to normal. Perhaps still push for treatment if you are that desperate...
Of course God is a work of fiction. But some people invent him in a "positive" way to cope. I do the exact opposite. I'm almost religious at this point, where my religion is hating God.
Always a pleasure, @Chinmoku. What has been your autoimmune work-up thus far? Have you had even the basic screens? It's not entirely impossible that we have somewhat similar issues, but just with different central reactions. Our receptor sites are surely fucked...
I only had an OTOblot test for autoimmune ear disease that turned positive but my hearing was stable and only high frequencies were affected the first two years so they decided never to investigate the autoimmune road further. However, now I have lost more hearing and both ears are affected so it's time to look into that. I'm seeing the ear-vestibular neurologist who follows me next week and I'll ask him for an urgent referral to rheumatology.
The HSP-70 test is basically useless and why almost no doctor goes by it. False positives and false negatives are extremely common.
Thank you, this helps contextualize already.
From the BTA page:
It tells people beyond a doubt that I have hyperacusis and am not faking. Good for a disability claim. But honestly I'd rather sue the clinic and everyone that led me to the slaughter.
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