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Bilateral After Starting Antivirals?

Discussion in 'Your Living Room' started by EkkoMusic, Aug 7, 2021.

  1. EkkoMusic

    EkkoMusic Member

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    Jul 26, 2021
    Hi all,

    I’m writing to the antiviral veterans and experts here. I am on day 17 of Famciclovir, 500 mg 2x/day.

    My bad ear has always been my right side—cochlear hydrops only. My main complaint was unilateral aural fullness, which completely disappeared about ten days into the antiviral!

    On day 11, I had an instance of fullness in my LEFT ear. While my right ear has remained great for a whole week now (first time in months!), I’ve been having these left ear fullness episodes daily for six days. What’s odd is that they so far only last about 4 hours each time, and usually hit in the early evening.

    Prior to this, I discovered more high-pitched tinnitus and ringing than usual.

    I decided to check my extended high frequencies (I check regularity using a tone generator because of my hydrops and have records of my thresholds). Sure enough, while I usually can hear up to 14k in my left ear, I can now only hear up to 12.5k clearly. I considered it was maybe just the tinnitus masking my ability to hear, but my right ear can still hear its extended frequencies just fine.

    I will note that my hydrops is atypical and has affected high frequencies instead of low frequencies in the past.

    I have read often that when starting antivirals, the virus will attempt to make “one last stand” and symptoms may worsen in the first few weeks. However, I’ve never read of someone getting symptoms in their good ear when starting antivirals without a history of being bilateral first.

    tl;dr: Started antivirals and got relief in my bad ear, but now experiencing fullness, tinnitus, and some EHF hearing loss in my good ear.

    I may consult my neurotologist during the week, yet the experience of this community is invaluable and I would love to hear your thoughts.
     
  2. Onedayatatime

    Onedayatatime Active Member

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    The years i have spent on this forum i have seen all sides of the AV discussion. Bottom line is AV’s help some folks manage their symptoms and others it has no affect. In my case, i dosed valacyclovir for 3 months and had no positive affect. My tinitus, fullness and hyperacusis increased the entire period i was dosing. When i discontinued after 3 months, my symptoms decreased. That was my experience from 3 years ago. I know others that it releived all symptoms. AV’s are not a one week trial. You really need to give em a three month shot to expect any noticable improvement.
    Add in the cyclical nature of MD symptoms and it can be difficult to nail down what treatments help and which ones don’t. Unless you have some sort of unbearable negative reaction, i would stay the course and give the AV’s an opportunity to work.
     
  3. EkkoMusic

    EkkoMusic Member

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    Completely agree! In fact I'll update, while yes I've begun bilateral symptoms, all my symptoms overall have decreased these last few days and I've felt mostly great. My theory is the virus was sitting quiet in my other ear, and the AV started poking it, and it started poking back (a sign that things were working, I hope). Still too early to really call anything though.
    If your symptoms were also worsening while ON the AV, I can only imagine the same behavior at play.
     
  4. Onedayatatime

    Onedayatatime Active Member

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    In my case, my symptoms degraded within several days and stayed that way the entire 3 months. No improvement, not even a subtle change. I am not a subscriber in the theory that all MD is viral. I believe the causes are broad. In my case, my condition stabilized with treatment for MAV. Unfortunately, that did not recover my hearing loss.
     
  5. EkkoMusic

    EkkoMusic Member

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    Yes, exactly my thinking! Though in a way it felt more a full "activation" in the other ear since I had never had bilateral issues before. Definitely staying the course, and this week has already been one of my best weeks yet.

    Yes, I know you often advocate for adding another antiviral element, and I've definitely been considering it. My question: Should I stay the course with famciclovir and add these if I do not see improvement or experience a setback in the next few months? Or is it wise to start this now, and what will it be doing in addition to the famciclovir? Thanks!
     
  6. Brian

    Brian Member

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    Jun 20, 2021
    Has your tinnitus improved?
     
  7. EkkoMusic

    EkkoMusic Member

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    Thank you, good points here. May I ask your thoughts on L-Lysine then? It seems the go-to supplement with AVs but I noticed you didn't mention it?
     
  8. EkkoMusic

    EkkoMusic Member

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    It has not sadly, but I'm still a little under a month into AVs. In fact, my high-pitched / EHF tinnitus has been a bit louder, though I'll take that over the aural fullness I was having, which you can't "mask".
     
  9. EkkoMusic

    EkkoMusic Member

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    Got it! What's the reason you rotate off acyclovir for 3 months a year?
     
  10. Brian

    Brian Member

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    I assume he wants to stave off resistance of the virus.
     
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  11. EkkoMusic

    EkkoMusic Member

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    Oh man, good point and that's an art in itself I gotta learn if so... Any recommendations on this? I was just gonna stick with my currently beneficial dose forever...
     
  12. Brian

    Brian Member

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    i just started Valtrex today at a low dose because I have multiple drug sensitivities. After a few days I’ll move up to the therapeutic dose. I’m doing 500mg 2x/day, then hopefully 1000 2x/day.
     
    • Like Like x 1
  13. Brian

    Brian Member

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    How are you feeling? How’s the tinnitus, fullness, vertigo?
     
  14. EkkoMusic

    EkkoMusic Member

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    Jul 26, 2021
    Just replied to your DM!
     
  15. jose suarez

    jose suarez Member

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    My L-lysine is 2000mg 4 times a day
     
  16. jose suarez

    jose suarez Member

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    thanks i will do that, i will add those other and reduce the lysine. with the 8 mg i feel super better, no symptoms, just the tinitus but in a low intensity (low tone)
     
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