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My update,,maybe some hope

Discussion in 'Your Living Room' started by Rgv, May 20, 2019.

  1. ronven

    ronven New Member

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    Oct 19, 2021
    I have been on antivirals now, a second time, for 2 1/2 weeks and I see slight improvement. In 2019 , I was on them for 6 weeks before all the symptoms dissipated.
    I was also / still am on lysine, bioflavinoid, b5, b6
     
  2. Brian

    Brian Member

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    Jun 20, 2021
    Ok I hope it goes away for you. I just started Famvir 8 days ago. How is your tinnitus? That’s my most debilitating symptom.
     
  3. Stratocaster

    Stratocaster New Member

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    Oct 23, 2021
    Ronven, my journey has been similar to yours. My first attack came out of a clear blue sky. No hint of symptoms at all. That first attack was utterly debilitating. Walking to the bathroom was impossible. I had to crawl, and even then, the entire room was spinning. That day, I broke a 20-year record of no vomiting. And boy, did I break it. Over the next 6 weeks, I would have episodes of varying strength approximately every 2-3 days. I had dizziness, ear fullness that came and went, hearing down to almost zero, only to return a few hours later, plus of course tinnitus. I had a month long trip to Europe smack in the middle of this, and it did take away from the enjoyment of the trip. Anyway, I was in Heathrow Airport getting ready to fly home, and I had an attack. I never knew that this would be my last attack for a long time!
    28 months go by.
    No symptoms, nothing, not even a hint of anything. No dizziness, no ear fullness, no tinnitus. During those 2+ years, I went back to drinking coffee and eating salty foods and living my life.
    Then...
    Once again, completely unannounced. I was on a very stressful phone call and suddenly my office started spinning, violently. I was on a Tilt-A-Whirl. I needed help from my office mates to get outside. I couldn't walk. I told them to call my wife to pick me up. I ran into the bushes and puked my guts out. That attack was the same as the first one, 2 years earlier. At home, I spent the next 4 hours in the bathroom, dry heaving because there was nothing to throw up. I was terribly weak and just went to bed.
    Once again, I had the same pattern. Every couple of days I would feel my right ear stuffing up and the hearing down to almost nothing. If I plugged my good ear, I couldn't understand speech in the bad ear. As the hearing loss dissipated, I would get dizzy. Sometimes really bad, sometimes just mild. Always the tinnitus, though. In the middle of all this, I found this forum and started on the B5/B6 and Lysine. Also Pycnogenol.
    After 6 weeks (just like last time) my dizzy spells seem to have stopped, my hearing fluctuations are not as bad, and I am relatively normal again. The tinnitus is still there.

    So, hopefully this is a cycle and it will run its course for you, like it did for me. I hope so, for both our sakes!
     
  4. Brian

    Brian Member

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    Jun 20, 2021
    Did you try antivirals?
     
  5. Stratocaster

    Stratocaster New Member

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    Oct 23, 2021
    Not yet Brian.
     
  6. Brian

    Brian Member

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    Jun 20, 2021
    I’m amazed your symptoms disappeared like that, even the tinnitus…weird.
     
  7. Stratocaster

    Stratocaster New Member

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    Oct 23, 2021
    Me too. My ENT says definitely sounds like Meniere's and that symptoms can be different for different people, or even for the same person.
     
  8. Brian

    Brian Member

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    I don’t get the long vertigo attacks that often but I started getting again what I call tremors. Mini vertigo attacks that last a few seconds and scare the shit out of me. They happen out of nowhere. I had 2 of those there other day. Luckily I was in bed.
     
  9. ronven

    ronven New Member

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    Oct 19, 2021
    Stratocaster,
    WOW, yours sounds way worse than my symptoms. I had one vertigo attack back in Jan 2019, then dizziness every day, tinnitus was off the charts, could not function. Then I I started the JOH regimen and antivirals, symptoms slowly started to go away within 6 weeks. This time around, it came out of the blue ( dizziness) not as violent as yours. Tinnitus is back as well. Been on the same regimen now for almost 3 weeks and getting slightly better but not there yet. Hope after 6 weeks, it will be gone.. God willing. Glad you're feeling better.
     
  10. ronven

    ronven New Member

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    Oct 19, 2021
    So , I have another update.
    After being symptom free for almost 3 years, Menieres reared its ugly head. I felt the symptoms in early Oct so I started back on my routine of valtrex, lysine, b5, b6 etc. This round was not as bad as 2019 but bad enough.
    It's been almost 2 months and I'm almost symptom free again. Even the tinnitus has gone down a lot.
    I guess this herpes virus can erupt at any point so I'm just going to stay the course.
    I do have issues typing and making errors, not sure what that means.
    Hope that helps.
     
  11. Punture

    Punture Member

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    Sep 4, 2021
    That’s great news!!
    What was the antiviral regimen you were on?
     
  12. ronven

    ronven New Member

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    Oct 19, 2021
    3000 mg Valtrex
    I'm down to 2000mg
    will probably maintain at 1,000
     

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