Kam75

Kam75

Member 33 From FRANCE
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Viewing thread Xenon Pharmaceuticals' XEN1101 — Kv7 Potassium Channel Modulator

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  • Yosemite
    I've just read your latest post in Susan's thread.

    Could it be that reducing the Mirtazapine dosage contributed negatively and brought back your symptoms? Otherwise, what could be the reasons?
    Kam75
    Hi @Yosemite ! Thank you for your message.

    I reduced the Mirtazapine at the beginning of January 2024 (I went from 22.5 mg to 15 mg).
    My condition was "stable" until early March.
    I think that if Mirtazapine was involved in the deterioration of my sleep, I would have felt the effects after about 3 weeks?
    I don't really know, but if I were to go back to 22.5 mg, it would be a kind of defeat for me.
    Yosemite
    @Kam75

    I understand why upping the dosage back to 22.5 mg would be seen as a "defeat" as it would probably mean that your sleep / T is dependent on Mirtazapine. It is definitely a dilemma. :-|
    4Grace
    The way you describe your Tinnitus below is how I could describe mine. Does food impact you? Spikes from sound? Is Hearing protection possible for you? Mine sends T through the roof.
    View previous comments…
    Kam75
    I take 22.5 mg of mirtazapine every night to help me sleep. Up until 1 year ago I was taking the maximum dose (45 mg).

    Tinnitus can really improve, but it can take a long time (it took me almost 5 years).

    Stay strong, I'm sure it will get better one day. And don't hang around this forum too much either, because there's a lot of negativity there, and that doesn't help you get better.
    Kam75
    My condition has improved over the last few months, I sleep better, my tinnitus is less intrusive and thanks to that I've even resumed a social life little by little.
    4Grace
    That's good news. So happy for you. I'm the negative on this forum. :( I have Nox and reactive T. I have some hope but cant see it getting better. It's an 11/10 and my ears hurt at the smallest of sounds.
    4Grace
    Hey Kam75, hope you are well. You had mentioned in one of your posts that your T is really bad. Unfortunately I am in that club. I wonder how you manage each day.
    yeezysqueezy
    Hi there.I saw your post about naproxen worsening your tinnitus. I took 5 days of naproxen in January for an ankle issue and my tinnitus has gone crazy and I've developed pain hyperacusis. How are you doing now? I hope you've seen some improvement. I could never have imagined the damage we could do with a few days of naproxen.
    View previous comments…
    Kam75
    It's exactly the same for me, I blamed myself to death for having taken this medication, I cried every night. But there is a time when you are resigned and no longer hopeful that it will get better...
    Fortunately I don't have the feeling that it made my hyperacusis worse.
    yeezysqueezy
    I'm glad to hear it didn't make your H worse. I'm really hoping mine improves. I am holding onto hope that by the end of this decade we may have some definitive treatment to actually reverse the damage
    Kam75
    I am very hopeful that Shore's device will help us. It is currently the most promising treatment. From what I read on Tinnitus Talk it is probably the only option for us in the near future.
    There is the Ebselen molecule too, but years of testing still need to be done.
    Biaxca
    Hey, hope Ur well. I wanted to ask have u been able to take anything that helps Ur T ? Personally I'm new to this and extremely desperate
    Kam75
    Hi @Biaxca! To be very honest with you, there is unfortunately no medication on the market today that can even alleviate tinnitus.
    At the time there was Tobalt, but it was withdrawn from the market because of its serious side effects.
    Kam75
    I am currently on Mirtazapine, an antidepressant that helps me sleep a little, but not completely.
    If your tinnitus is recent, it may very well get better or even disappear. Don't give up hope! Shore's device should be on the market in the next year or two and that might help.
    KoolKat
    we were barely out of high school when this tragedy hit us smh i just cant get over
    the "What ifs" and the unknown future of this unpredictable torturous condition.
    so many opportunities squandered cause of this smh. lets hope that this is the last decade we ever have to deal with this, and that treatment is on the way cause im ready to live LIFE
    Kam75
    Hi @KoolKat, thanks for your message.

    When I had my first tinnitus in 2014, it was so mild that I was able to live completely normally.
    It was the sound trauma I had 2019 (so at the age of 28) that propelled me into the Abyss of hell.

    Since this trauma I have at least 3 more sounds in my head (so 4 sounds in total).
    I have a very high-pitched sound, a dental drill sound and an electric sound.
    Kam75
    I have also developed hyperacusis.

    I also feel, like you, that I have wasted my best years.
    I've been single for 6 months and don't know how to find a woman because all the places to meet are noisy.
    On top of that I can't sleep, even with 45 mg of Mirtazapine + melatonin... These damn sounds wake me up all the time.
    Kam75
    I can't help but feel very pessimistic when I see that all potential treatments for tinnitus have failed.
    And even if something does work, if it does, we'll probably be too old to enjoy life.

    Best regards, and thanks again for your message. It is always good to be able to talk to someone that can undestrand you.
    KoolKat
    despite living in different countries we got alot of similarities. who would of thought 2013 was our last year of normal living. i feel our full potential was never achieved. I had so much to look forward to in 2014, n WE both were in our young early-20s. such a shame our years were wasted dealing with this. I pray for our sakes susan or someone comes through for us.
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