BB23

BB23

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Viewing thread Xenon Pharmaceuticals' XEN1101 — Kv7 Potassium Channel Modulator

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  • BB23
    Realized B4 the industrial revolution people died bcs of wars(nuked/gassed), famine, floods, diseases. humans were never meant to live happy
    View previous comments…
    Juliane
    Agree. I often wonder if this planet is indeed hell.
    4Grace
    For the most part the world is a beautiful place. People are beautiful. Most people, even the poorest are happy. The poorest countries in the world experience the least anxiety and depression. Did you ever see kids playing in war torn countries. I don't know. Outside of my soul everything looks like a dream.
    Pinhead
    Just a fact check: No one was getting 'nuked' before the industrial revolution.
    BB23
    I just can't do it anymore. The TTTS is so bad, it's like a pulling sensation in my ears. If I pull on my earlobe my hearing enhances also
    BB23
    I made mistake after mistake, never realized I wasn't like others. I didn't even realize who I was until 37 years into this mess of a life..
    BB23
    I realized I have autism. Me being autistic ruined the past 37 years, which also landed me here. I had it all, ended up ruining it all...
    View previous comments…
    TheCapybara
    Welcome to the club. There's actually a very strong link between autism and tinnitus, we're far more sensitive to sounds and it seems easier to develop hearing issues through that.
    BrOKeN_1
    Made you different. Has given to a different view of this life. Not worse. Not better. Just your own. No one here gave themselves tinnitus knowingly. Therefore NOONE is at fault.
    Christiaan
    Don't be too hard on yourself @BB23 Autism is a spectrum and that could make it difficult to get the right diagnosis and adequate help, but as of late there's luckily more public awareness about it and that also helps to make society more inclusive for people like us
    BB23
    Pretty sure I have fatal to insomnia. Thanks cipro.
    Varda
    The "floxies" awareness stuff online and them getting a black box warning on that stuff really saved my life. Almost every time I go to a doctor the very first thing they do is try to push fluoroquinolones on me.
    Varda
    When I tell them I won't be taking them without fail the doctards give me a dirty look and tell me "wtf are you crazy? you don't know what you're talking about fluoroquinolones are fine."
    BB23
    @Varda street dealers have the same mentality. they wouldnt tell you their products are bad.
    BB23
    I hope all doctors have a taste of the poison they push on us.
    View previous comments…
    Tryn2BHopeful
    However how I have been treated since getting T, has made me lose all faith in doctors.
    BB23
    @Tryn2BHopeful if it were just the t, I'd be ok with it. There is a neurotoxicity page on facebook, my symptoms align with the things mentioned there...
    Varda
    I once had to go to a doctor for a simple broken bone and the idiot couldn't even manage to bolt it back together without cutting a huge nerve cord in the process.
    BB23
    Don't worry guys. It's just a sound, it won't hurt us, surely we can't know better than these doctors, right? Right?
    BB23
    I'm not gonna last longer guys. I'm sorry. Fluoroquinolones and especially mirtazapine ruined my life.
    View previous comments…
    BB23
    @Tryn2BHopeful sleep and vision is fucked, have constant headaches. sleep especially fucked
    Travis Henry
    Fuck the ignorant doctors!!! All they had to do was tell us time and quiet is our only survival tool!!!
    Varda
    I managed to avoid fluoroquinolones because of the "floxies" harm awareness and black box warning stuff. I think the same sorts of things should be done around azithromycin which I had thought was a "well tolerated antibiotic"
    AverageJoe12
    How do you decipher what is TTTS versus hyperacusis versus pain hyperacusis. The ringing I could give 2 shits about, but the problem is it's borderline inseparable from the sensitivity to sound, the discomfort in my ear, the tightness, the fullness, the cramp sensation I get deep in the ear canal.

    What muscle relaxers have you tried, prescription or otherwise?
    BB23
    Muscle relaxants are all serotonergic, they might exacerbate your T or give you Visual Snow syndrome, I didn't try any. Those sensations are indicative of TTTS, on top of those my ears vibrate to loud sounds and touching my face. That's how I know I have TTTS.
    BB23
    People say magnesium helps them, some people on facebook support groups say antiepileptics help them... IDK.
    BB23
    TTTS is worse than tinnitus. Can KV7 drugs relax these muscles? Kv7.4 maybe.. Or maybe these drugs curing hyperacusis could help with ttts?
    PennyCat
    I'm not sure if this will be of any hope or not, but for the most part my TTTS has settled. I'm actually having a bit of a flare up right now, which still happens every month or two for a weekish, but other than that it's not there. I have seen other people say the same and when I was in the worst of it, I didn't believe them. I still get anxious when it flares up. But it is possible it will get better for you!
    BB23
    Can not go out if the weather is cold. I get HORRENDOUS ear pain. This tensor tympani stuff is no joke, worse than T itself.
    cyberspace
    Opposite for me right now, I'm stressing out and scrambling to find a way to get out for the summer since high temperature = my condition is much worse
    cyberspace
    It's extremely hot where I live during the summer, I just want to escape and stay somewhere else
    BB23
    2/2 TTTS w/ H. Fluttering. A constant tugging feeling. Crackling. CONSTANT Acidic Burning pain. Nothing works. NOT due to anxiety. HELP!
    BB23
    1/2 Dysacusis is completely gone, reactivity is almost completely gone. All I'm left is with T/H. T is at a 1, can go up to 3. Problem is
    BB23
    Tinnitus awareness would be bad for business. Nobody would buy guns, enlist in the army, go to concerts, use antidepressants and antibiotics
    ZFire
    Yeah, because raising awareness about T will surely deter 2nd amendment gun loving Americans from buying firearms. Not to mention the US military (army, Navy, Air Force specifically) already facing recruitment struggles for years now. Enlistments keep shrinking. But let's blame T awareness…
    AverageJoe12
    Howdy partner...what dosage mirtazapine did you in and for what duration did you take it? I'm on it AFTER an acoustic trauma where hyperacusis was the big issue. Had H without the T, then post-mirtazapine 7.5mg the rining started. I don't know if the ringing was going to start anyways or if mirtazapine made an already fucked up situation even worse. Have you tried anything to undo some of this damage?
    View previous comments…
    AverageJoe12
    Hey dude - so H before T for you as well after the 2004 incident? What has the trajectory of your injury been since then? Any improvement since '04 or would you say you're still the same?
    Yosemite
    @AverageJoe12

    Are you sure it's the Mirtazapine that gave you T?

    My T started about three weeks after my acoustic trauma. T onset is sometimes delayed.
    HighleyTall
    @AverageJoe12 It's gone from bad to worse without exposing myself to noise or without over protecting. Maybe I should have over protected. If I could go back in time I would probably go for the round and oval window reinforcement. A mechanical protector. But it wasn't possible for me in Belgium. I think my T is too bad to do it now. It has become painnitus.
    BB23
    Is 30-40db tinnitus considered mild? I can stand clanking of cutlery at 106db but sounds quiter than that, I find loud, why?
    SarahMLFlemmer
    Not sure!
    Tryn2BHopeful
    I dont even know what mild would be, if its what I got then damn! Been trying to get help to try to determine the level of T I have and a doctor to take me seriously for 6 months now. My only guess is maybe it has something to do with the range in which your T is.
    SharonBell
    Isn't Trazadone a ssri?
    View previous comments…
    SharonBell
    Ok my doctor prescribed it for sleep to start with and then told me to take it for my anxiety, but I do sleep good when I take it. I'm just scared taking any kind of medicine. It's hard to tell if my tinnitus gets worse because it's always loud and and 24/7 so alot of things I eat make it louder, so it's hard to tell about medicine.
    BB23
    @SharonBell It doesnt matter if it is an SSRI or SARI. They all cause the same damage. Serotonin is not supposed to be messed with at all. Go to survivingantidepressants.org for more info. I am one such victim so yeah what they say is true!
    gameover
    Fucking poison pills should be banned. Or at least come with big warning about tinnitus. But then 70% people would not take them, so no profit. Fucking medical industrial complex mafia.
    BB23
    All I did was to go to a fking doctor, gave me fluoroquinolones and I lost sleep. Then gave me Mirtazapine and I Lost my silence got vss.
    View previous comments…
    Juliane
    I am so sorry :-( You should sue that doctor. Honestly
    Juliane
    I have avoided doctors for years. So many examples of them causing or worsening illnesses. Biggest scam on earth that they heal people. I have never seen any examples
    Varda
    I've contacted a few lawyers and asked them if they would like to sue the doctor who gave me tinnitus. I asked if they could work on a contingency basis where their fees will be paid by the doctor when they win the case and none have bothered to write me back.
    SharonBell
    You were talking about SSRIs I take trazodone. It's a serotonin reuptake inhibitor. They told me it wouldn't cause tinnitus. They say Dr. prescribes lit all the time. I only take it sometimes for my anxiety.
    BB23
    They don't know any better. It may or may not cause t. There are people who got it from tradozone. Messing with serotonin is risky.
    BB23
    Oh just saw you said you only take it sometimes. That is NOT recommended, they don't work like aspirin, if they aren't taken consistently, it might cause more harm than good, please go to surviving antidepressants.org to find out more...
    BB23
    How do you relax the tensor tympani muscles? Magnesium doesn't do anything... they are contracted all the time!
    View previous comments…
    MindOverMatter
    @BB23 The only "lasting" solution for this is to get help with "fight or flight" / anxiety. Muscle relaxants, potent magnesium and so forth can be of help, as mentioned, but imo ttts is very much stress and anxiety related. Once that is under control, it tends to get a lot better (personally experience based).
    BB23
    @Tryn2BHopeful scared to take any of the mentioned drugs like carbamezaprine or whatever since they touch serotonin receptors in the CNS...
    yeezysqueezy
    liquid ionic magnesium is the only mag that works for me. I'm also looking into botox into the tensor veli palatini muscle
    BB23
    I'd like to know if it's right to place all our hopes on a drug that may come out (xen1101 /bhv7000) around a thousand days from now..
    RunningMan
    I don't.
    N
    No. Go for the much preferred spread betting.
    Juliane
    I don't have any hope for any sort of treatment for T. Sorry, I just don't. It would take a miracle. Nothing less
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