Valacyclovir - Month 8 Update

Discussion in 'Your Living Room' started by Sara78, Oct 8, 2015.

  1. Sara78

    Sara78 Member

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    I've now been on Valacyclovir for 8 months and doing great. I started with the 3 times a day for 3 weeks, then 2 a day for 3 weeks and now on the maintenance dose of 1 pill a day. I've had a couple minor setbacks but overall feel back to "normal."

    I reduced the number of JOH supplements I was taking due to having my first ever experience with kidney stones (may have been caused by the number of JOH supplements I was taking or the Valacyclovir...either way I'm now doing well only taking one of the JOH supplements daily). The only side affect I've noticed with taking the Valacyclovir is that I now get UTI's every few months. My doctor continues to monitor my kidney and liver function with blood draws every 6 months to ensure there is no damage from the extended use of the prescription. Those who take Valacyclovir...how long do you remain on the maintenance dose?

    A trigger for me is definitely gluten. I'm now totally gluten free which was a major lifestyle change but it has helped tremendously. Now if I dine out and there happens to be gluten in something I immediately get the brain fog, dizziness, headache and my bad ear starts to feel full. I'm also eating organic foods as much as possible and exercising.

    I've also cut back on my NUCCA appointments to every 8 weeks.
     
  2. Muff

    Muff Member

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    Jul 20, 2015
    Fantastic news Sara78!! Thanks for sharing your success story. I tried valacyclovir in July and had bad side effects so had to stop. I may try it again at a much lower dosage. Which JOH supplement are you still on? Thanks too for the heads up about UTI's. What a pain but it is a small price to pay to feel better.
    I have cut out gluten also and try to eat organic. I feel a bit better but it really hasn't helped with my menieres symptoms. Has your hearing improved since taking valacyclovir?
    Congratulations again on your success!
     
  3. Vicki

    Vicki Guest

    Muff I had a bad side effect from valcyclovir too but been on acyclovir for almost 3 years no side effects to date.
    I'm vertigo/dizzy free since being on acyclovir, you might want to try it to see if you tolerate it better.
     
  4. Vicki

    Vicki Guest

    Great news! Sara :)
     
  5. Santa

    Santa Member

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    This is great news Sara

    I i have been on valacyclovir for almost 10 months. It was during the third month when I stopped having vertigo, brain fog and aural fullness.

    Sometimes I only take 1,000 mg per day. But, I usually take 2,000.

    My hearing still fluctuates from fair to good. It's never as good as my right ear but sometimes almost.

    I still have the dreaded tinnitus. But, who doesn't. Many people without meneieres have tinnitus.

    Good Health to All
     
  6. Muff

    Muff Member

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    Thanks, Vicki. I tried acyclovir too for about one week. The acyclovir gave me terrible headaches and extreme head fullness. I may try valacyclovir again at the lower dose....if the side effects comes back, then try the acyclovir again. Such a frustrating process ???
     
  7. Sara78

    Sara78 Member

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    JOH supplements - I take one Lemon Bioflavonoid 700mg daily and Vinpocetine 10mg 3x daily.

    Yes, my bad ear no longer feels plugged and no pressure therefore no longer affecting the hearing. Thankfully I caught the MM early so I didn't have much hearing loss to start out with. Still have minor tinnitus.
     
  8. JanLyn

    JanLyn Member

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    Sara, I'm so happy to hear about your success.

    That's interesting that gluten is one of your triggers. Do you also have digestive symptoms from gluten or does it just cause the Meniere's symptoms? I wonder if that could be one of my triggers as well.

    How long did it take before you saw improvement on the valacyclovir? I am taking that now.
     
  9. scott tom

    scott tom Active Member

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    This is great news.

    I will stay on the maintenance dose forever, bc this is not a cure. It's a way to control the virus.

    I have not heard of V causing kidney stones. Much more likely to be caused by all those supplements, which may or may not contain the ingredients they claim.
     
  10. nicmger

    nicmger Member

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    Great news! So happy you were able to catch it early and get prescribed for anti-virals before damage done. I had significant hearing damage before I was successful in getting the prescription but at least hearing is not getting worse, and I am feeling better without the ongoing pressure and vertigo!
     
  11. Sara78

    Sara78 Member

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    I had digestive symptoms from gluten but also had headaches, anemia, dizziness and brain fog.

    After a couple months on Valacyclovir I noticed an improvement. Once I was able to eliminate all gluten from my diet...the combination of both has brought me to such a better place than I was a year ago. I can honestly say I feel symptom free of MM...finally :)
     
  12. Sara78

    Sara78 Member

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    Glad to hear the prescription is helping you. There is nothing better than a life WITHOUT vertigo!
     
  13. hopefulstill

    hopefulstill Member

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    I have been taking the valacyclovir for 2 1/2 months along with the JOH supplements. I pretty much feel normal now. I have my life back!!!! :) :eek: I get a little too enthusiastic and eat way too much sodium (right now can eat a lot more) and drink wine and then the tinnitus returns. But NO VERTIGO.
    Thank goodness I found this forum.
     
  14. Carissa94

    Carissa94 New Member

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    So I started valcyclovir 20 days ago, 3000mg a day. I was planning on switching to 2000mg a day tomorrow but today had my first vertigo episode in a month. Not sure if it is ok to go down to 2000mg
    That being said I got a Nurse practioner to give me a prescription but she agreed to only the 2000 starting tomorrow. I have had cold sores in the past so she said she can justify my prescription for that reason.
    Do I try the lower dose or call to see if the NP will increase for a few week?
     
  15. scott tom

    scott tom Active Member

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    Personally, I would ask to stay at 3g for a few more weeks.
     
  16. Vicki

    Vicki Guest

    stay on 3000mg for now since you just had a vertigo attack.
     
  17. linda

    linda Member

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    Glad things are going good Sara78! Gives us all hope!
     
  18. Hollyflo

    Hollyflo Member

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    I go day-by-day on the Valacyclvir dosage. Hardly ever 1 gm usually 2-3/day. Blessed that my MD gets it and supports my instincts vs a fixed protocol. Gosh if they had one that worked, I'd stick to it!
     
  19. scott tom

    scott tom Active Member

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    I went back to 2000 today and the ssx were gone in an hour. Amazing stuff.
     
  20. BayMama

    BayMama Member

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    That's great news, Sara.

    I haven't been able to get below 2.5 mg/day for more than a few weeks. I guess that's unusual. Every time I've got to 2g/day I've had a set back.
     

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