M

MiaVIL

Member From Underworld
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  • M
    I would donate and could raise money for things like ME implants to move faster… I don't want things abandoned
    M
    chirping tinnitus is awful
    Varda
    At least with constant tones they can kind of fade into the background but the chirps are so distracting and attention grabbing.
    Pinhead
    This is really it. It takes over your entire consciousness. No one seems to understand that. I can no longer think coherently because my brain is chirping and it has decided chirping is more important than conscious awareness. I'm already dead.
    M
    @ploughna have you had a consult with Dr Djalilian's migraine protocol?
    P
    yes, but not signed up yet. In the middle of a job change & relocation, so waiting until my situation is a bit more stable before starting anything like this
    M
    We had a lot of fun, proud of what you accomplished and ur strength. U were spunky and beautiful. I loved everything that made you, you.
    BB23
    I have been dealing with lots of issues. if tinnitus is the only issue, a solution might be around a corner. just say, c u to mia again, if you can. be glad u dont have visual snow, total insomnia, mania, ttts, hypershitusis and headaches to go along with your t.
    M
    @BB23 my tinnitus isn't somatic, and if it was, I would be more hopeful plus we don't know when it will be approved, submitted or released. I am sorry you're going through those other awful health conditions, but my tinnitus is completely unbearable and painful and you really don't know what all I have been through and go through along with it.
    M
    Goodbye Mia. I never wanted to really say goodbye, it was always just "c u later". Now that I know that there is 0 chance for a recovery
    M
    According to facebook and reddit, NOBODY completely recovers or gets a reduction in T. I only see success stories on here… hmm… fake
    View previous comments…
    crescentsky
    I think it can happen. I did recover from my concert-T 10 years ago. Complete silence. Not sure abt my current-demonic-T.
    ECP
    @kingsfan I agree with you. I think Reddit is a catch-all type of basket full of random people commenting on random topics. The people who are most passionate or most knowledgeable about a topic are usually found at specialty websites devoted to said topic.
    gameover
    Severe T itself is rare, and recovery even more so. But it happens.
    M
    Saw a more specialized audiologist- My middle ear space, including my ear drum need to heal before I can even think of getting relief.
    M
    I am blowing up angry now. All talk no action Shore. RED FLAG- hiding the most important info- FDA approval, coming out, non somatic etc
    M
    I can't do it anymore. I have one of the worst cases here. Nothing is improving like I thought. High hiss screeching. I have hearing loss.
    M
    So do ppl who get T from viruses or noise have less of a chance of reduction than people who have age related hearing loss and wear HAIDS?
    RunningMan
    Age related hearing loss isn't going to get better until there's a treatment for it. T is more common in older people. And for sudden noise trauma, it seems the younger folks have a better chance of recovery in the short term.
    M
    I got mine from an infection at 31. My FIL has age related hearing loss from noise exposure at his job. He wears HAs. He had loud tinnitus and after 1 year with HAs he no longer has it. He can go 2 weeks at a time without his hearing aids and it doesn't really come back… maybe a small amount but nothing like it was.. then he puts them back in again and it goes away. He goes to all types of loud places too
    kingsfan
    My stepfather has tinnitus and hearing loss from riding motorcycles and working on heavy machinery. His tinnitus goes completely away while wearing his hearing aids
    M
    I miss silence, but I also miss the cutest little fleeting T episode I had in R ear today. Thin, 8K didn't last long enough.Felt good in ear
    Thizzle
    Those are the furthest thing from cute lol
    M
    They are when you have my level of T severity.. they are a reprive… plus how they feel in my ear helps the chronic irritation I feel from my ears and current T
    M
    I would rather have pure tone
    View previous comments…
    M
    Had the cutest little fleeting T moment in R ear today. So thin, around 8K. Felt good in my ear and he was cute. Wished I had that over what I normally have.
    gameover
    Yes. You have hiss from hell? I have both, and the hiss is worse. Only recently I started suspecting ETD, which nobody has diagnosed me with.
    M
    @gameover pls do your research about ETD and get copies of your audiogram to compare. ETD often shows type C tymphs.. the pressure must be way in the negatives.
    M
    My CT scan says "BILATERAL MIDDLE EAR DISEASE" and a bunch of other fancy words… soft tissue, opacified cells… don't know if causing t
    M
    Worsening. I thought I was getting better… it was barely noticeable a couple days last week now its been horrible this week. I want to die.
    View previous comments…
    M
    @RunningMan I doubt it. My CT scan shows "middle ear disease". I have no idea what to do… I get screaching. I thought I was healing.
    gameover
    You have a way to kill this shit. Look for better doctor now!!!
    M
    @gameover I'm trying but I don't what is wrong with me. Hopefully I get some answers within the next 2 weeks. How do I even know that ME disease causes this much T?
    M
    Ok so horrible screeching tinnitus all night. This morning I pulled a glob of bloody mucous from my right ear!!
    kingsfan
    That doesn't sound good. Could be an infection or ruptured eardrum. I would go to urgent care or ER.
    M
    I have ear tubes in and nobody cares or will do anything to help me.
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