Anti viral feed back and time scales

Discussion in 'Your Living Room' started by Jonny_rotten, Sep 12, 2025.

  1. Jonny_rotten

    Jonny_rotten Member

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    Its gotta be worth a shot hasnt it
     
  2. Pa Cowboy

    Pa Cowboy Active Member

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    For me, next month it will be 7 years of 3 grams/day taking valacyclovir.
    Get bloodwork done and you are good.
    Doc said antivirals are a relatively benign drug.
    I suppose if you had severe symptoms like I did, you wouldn't be fooling around with looking for a lower maintenance dose. Doesn't make sense to lower the dose.
     
  3. Jonny_rotten

    Jonny_rotten Member

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    Is that stuff better that you use compared to my anti viral?
     
  4. Pa Cowboy

    Pa Cowboy Active Member

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    I have no idea but, you would think there's not much difference.
     
  5. RogerDodger

    RogerDodger New Member

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    I've been on 3g/day Acyclovir for over 3 weeks and doing very well but not quite 100% on the hearing recovery. Slight fullness, muffled and tinnitus still comes and goes. I seem to be stuck at this level. So a few days ago I decided to get a little more aggressive and added 20mg Prednisone for 2 days, then 10mg for 2 days and today I am at 5mg (cleared all this with my doctor first). This really did the trick for me (might not be applicable for you) and I'm back to 100% both hearing and balance. In fact I got to 100% after the first day of adding the Prednisone. I'll end the Prednisone after one more day and hope all stays well at 100% and then try to taper the Acyclovir. If I ever get another attack I am thinking a combination of Prednisone and Acyclovir right from the get go will be most effective for me personally (along with diet and reduced activity/loud noise, etc.). I'm starting to get back to a more normal life and it feels great. Such a huge relief after battling this off and on for 3 months.
     
  6. RogerDodger

    RogerDodger New Member

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    Quick update, I have successfully tapered to 2g/day of Valacyclovir. Doing very well with excellent balance and hearing that is excellent some days and other days just a little off. I think in another month I'll be down to 1g/day Valacyclovir for maintenance.
     
  7. Jonny_rotten

    Jonny_rotten Member

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    Good news that! How long has it been? Do you get vala on prescription?
     
  8. RogerDodger

    RogerDodger New Member

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    7 weeks. Yes, i got Valacyclovir on prescription.
     
  9. RogerDodger

    RogerDodger New Member

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    Today I am down to 1.5g/day of Valacyclover and 1.5g/day of Lysine. Hearing and balance excellent.

    Cautionary tale: So a few days ago I slipped up a bit on my diet. I had Tiramisu one day, and then the next day had dark chocolate. I was also eating some granola for breakfast that had pumpkin seeds and oats. Boy did I pay the price. Nearly slipped back into an attack. So, let that be a lesson. Lysine is not going to do its job if you eat things very high in arginine. I also find it better to take Lysine 20-30 minutes before meals rather than 2 hours after.
     
  10. Jonny_rotten

    Jonny_rotten Member

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    I was eating alot of granola and i was as bad as ive been soon nipped it in the bud!
     
  11. Jonny_rotten

    Jonny_rotten Member

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    Anti virals seem to be working attacks only last about 5-10 seconds now and are only eod or something hopefully were getting on top of things

    keep the faith wish me luck
     
  12. Pa Cowboy

    Pa Cowboy Active Member

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    Glad to hear these success stories!
    My last vertigo episode was October 1 2019, took about another year to get completely over the disease.
    I've eliminated lysine several years ago and only take valacyclovir plus some vitamins.
    The food trigger was never really a thing for me...I eat anything with no effects.
    I say this for the folks with food triggers, some day, you will eventually be able to eat whatever you want with no issues.
     
  13. Jonny_rotten

    Jonny_rotten Member

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    Can you put a rough timeline on recovery on anti vs
     
  14. Pa Cowboy

    Pa Cowboy Active Member

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    Started valacyclovir in March of 2019...at first relief came slowly, for me vertigo episodes always lasted 12 hours but were not as intense as the months dragged on.
    For the next 6 months every single vertigo episode lasted 12 hours, then October 1st was the last episode. Slowly my hearing began to return but to this day some minor tinnitus remains.
    All symptoms have been 100% gone since June of 2020.
    So...6 months for vertigo to end, then another 8 months for hearing to completely return. I've been disease free since June of 2020.
    That's why I always say, don't reduce the amount you take or you could fall right back to having problems.
    I'll never quit taking 3 grams a day.
     
  15. Jonny_rotten

    Jonny_rotten Member

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    Thank you mate
    Very positive signs
     
  16. Jonny_rotten

    Jonny_rotten Member

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    Touch wood no attacks since last post about 2-3 weeks longest ive gone in a while

    had a head cold in this time aswell that ALWAYS triggers me so good signs

    2 lysine a day different times
    800 aciclivor x 2 times a day


    Hopefully they are working there magic and i keep getting “ better”
     
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  17. RogerDodger

    RogerDodger New Member

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    About 2-1/2 months in and I'm mostly symptom free. Down to 1.5g Valacyclovir and 1.5g of Lysine per day. I take them 3 times per day (1/3 dose 3 times). Occasionally my right ear hearing will get a little weak due to being careless with my diet. Balance is excellent, zero vertigo. One thing I discovered is eating a little yogurt each day eliminates any stomach issues from the drugs. My issues were mild but now completely normal. I've read that Valacyclovir can impact the stomach biome and this is true for me. Yogurt, the magic dessert!
     
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  18. RogerDodger

    RogerDodger New Member

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    Still on 1.5g Valacyclovir and 1.5g of Lysine per day. Still no symptoms except very infrequently some mid-range tone tinnitus creeps into my right ear. When this happens I up the Valacylovir to 2g per day and that takes care of it. I've also been very careful about food high in arginine and avoiding them. All in all I'm doing fine. I think the dosage I am at now is going go carry one for quite a while, if not forever.

    One other thing I will mention is that when I am around noxious fumes, VOC's or jet fuel smell at the airport, my tinnitus and hearing problems act up and I start getting MD flare up symptoms. I think that toxic fumes are a major trigger for me. This all started about 4 years ago when we had many wildfires here with smoke in the air. I also noticed other VOC's and fumes causing a little flare up in symptoms. I carry a charcoal filtered face mask now when traveling and I wear a respirator at home when doing any painting or projects involving VOC. I'm probably not the only one with this trigger.
     
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  19. Jonny_rotten

    Jonny_rotten Member

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    Im so far so good since the inital bad period calmed down im on acicylvor 800mg 2 x a day and l lysine 2 x a day no food and zero attacks in a decent bit now i was having a few a day at the start hopefully im in “remission”

    hearing not much improved but tinnitus alot less ( comes and goes) same with fullness

    impressed so far

    thanks everyone whos helped
     
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  20. Jennie c

    Jennie c New Member

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    does any one have any advice for the ear fullness, this seems to be my main issue at the moment. I am taking the JOH regime and betahistine but after 2 weeks of no attacks or fullness in the ears, then 3 days ago the fullness and low hearing level is back.
     

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