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Worse again on antivirals

Discussion in 'Your Living Room' started by dwaynehoover, Jun 17, 2015.

  1. dwaynehoover

    dwaynehoover Member

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    I took 3000mg per day of valacyclovir back 3 weeks ago and by the 10th day was extremely off balance and had more vertigo episodes in a couple day period than I ever do. I quit at that point. I started again on plain acyclovir 10 days ago and same thing happened, by yesterday (9th day) I could barely function (never happens otherwise) looked drunk half the day and at one point prayed to god that I could make it home from the supermarket, worst dizziness that I've had in a long time. So, today I plan to not take the antiviral as it has made me extremely anxious. Has anyone taken these and just got worse and worse each day, more than usual by far and kept right on taking it? I don't mean that I didnt get improvement, I mean that I became much worse than usual and it did not let up. Any comments? Thankyou for your help.
     
  2. dwaynehoover

    dwaynehoover Member

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    Who feels strongly that I should continue and why? Am I not slowly destroying my hearing with the great increase in vertigo episodes.
     
  3. yanksgirl

    yanksgirl Member

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    I had similar results. Had to discontinue the anti-virals. Others here have also. But--many have been helped and it could be the type and dosage of the anti=viral med as I understand it. Like you, I gave up on them since my Ent didn't want me on them in the first place and I didn't have vertigo anymore--3 years now since the shunt surgery. I had to get the meds from my internist--and he was reluctant but agreed to let me try. That is just my experience with them. Others here can testify to much better outcomes.
     
  4. Vicki

    Vicki Guest

    I know that people who start taking antivirals for MM can get worse before better. It did not happen to me but there are many posts about it on these and the archived forums. It usually means the antiviral is working and you are experiencing the die off effect.

    I don't know how much worse they felt and for how long but hopefully they will respond because I know from reading posts many have stuck it out thru the worse part and got symptom relief after that had passed.
     
  5. Vicki

    Vicki Guest

    also check if the antivirals are from the USA, some have had poor results on antivirals made in other countries.
     
  6. vitolony

    vitolony Member

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    I got worse on the anti-virals before I got better. I stuck with them anyway. Best damn decision I ever made. Haven't had a vertigo attack in over 2 months. If you want your life back, you owe it to yourself to give them a shot for a few months before deciding that they are not working. The inner ear is an extremely small place. Anything that upsets the equation and balance of that system is going to affect your disease, maybe even for the negative in the short term.
     
  7. Santa

    Santa Member

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    Hi Dwayne

    I started antivirals because of aural fullness not because of vertigo. Before antivirals I had six vertigo episodes over a two year period. People on this forum got some relief from the aural fulness from Av. So, I tried acyclovir. Within a few days I was having vertigo almost every day. Some said the AV wouldn't cause me to have vertigo. Some said stick with them for 6 months and it will be two steps forward and one step back. But, by 6 months I should have relief from vertigo and aural fulness.

    After five months I switch to valacyclovir. The frequency of vertigo attacks had lessoned on the acyclovir but valacyclovir was supposed to be better. I was on the valacyclovir for three months and still having the occasional bout of vertigo. I was taking 3,000 mg per day.

    After being on valacyclovir for three months I tried OPC and within three days I had vertigo for the last time. I was still taking valacyclovir and I still do but I am now taking 2,000 mg.
    I have been vertigo free for four months. My aural fulness is barely noticeable.

    Before the antivirals I had serious brain fog and aural fulness to the point I thought I was going deaf. Yes, the vertigo was terrible but I am glad I stuck with the AV's and am sticking with them. I tried to taper down to 1,000 mg but I could feel the aural fullness creeping back.

    I am still taking the OPC and I have added monolaurin which is supposed to kill the virus.

    Good Health to You!!
     
  8. dwaynehoover

    dwaynehoover Member

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    Hi Santa, (also thanks to everyone for replies) you mean you started acyclovir and started getting dizzy every day or so and this continued for how long? can you still remember? and you stuck it out for months. You are a tough dude. Again today I barely made it back from the dentists office. How can you do that? and it paid off? I suppose thats what you are saying, did it slacken off after a week or 2 or just dizzy for months? I suppose everyone is different. Thanks again, Dwayne
     
  9. Vicki

    Vicki Guest

    Dwayne I did some searching about the Herxheimer reaction, die-off on antivirals for HSV's and the advice there are a few different suggestions to help get through it

    Most sites say it usually lasts 7-10 days then you start feeling better
    Most sites suggest to drink plenty of water because your body is releasing toxins and the water helps that.
    this site
    http://forums.phoenixrising.me/index.php?threads/how-do-you-deal-with-die-off-from-antivirals.26340/
    has members suggesting to start slowly on antivirals and gradually increase, if you feel the die off reaction go back done to previous dose.
    Some toughed it out
    One site for lyme disease, for die-off on antibiotics says One is is to stop the meds then once you feel back the way you were before taking them start again at a lower dose, a dose where you might just have mild die off reaction but nothing severe and gradually build up to the recommended dose.

    I hope this helps
     
  10. Vicki

    Vicki Guest

    If it is too difficult for you to remain on the 3000 mg of val or the 2400 mg of acyclovir.

    Maybe you can start with 800 mg of acyclovir or 1000 mg of val for 2-3 weeks or so then increase to next higher dose etc etc (kind of work your way up from maintenance dose to full dose slowly) and decrease if you feel your getting worse until you can increase and not feel worse, then once you are able to get to the full does, start following the antiviral dose protocol for MM and start decreasing accordingly until you can get to the maintenance again w/o any symptoms
     
  11. dwaynehoover

    dwaynehoover Member

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    Thanks Vicki, what a jewel you are. I agree, I have now decided to take 800mg tomorrow split up morning and night, today I took only 400 to let some of it get out of my system (I already feel some better this evening) and will see how I do on that amount.
     
  12. nicmger

    nicmger Member

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    I take the valtrex (generic version). I will say that when the pharmacy filled a refill with a different lab (Milan vs Northstar) I immediately had issues within 24-48 hrs. Fortunately so far my pharmacy agrees to special order in my preferred manufacturer. Believe that Northstar is US and Milan might be from India?
     
  13. Vicki

    Vicki Guest

    You're very welcome Dwayne Please keep us posted!
     
  14. Santa

    Santa Member

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    Hi Santa, (also thanks to everyone for replies) you mean you started acyclovir and started getting dizzy every day or so and this continued for how long? can you still remember? and you stuck it out for months. You are a tough dude. Again today I barely made it back from the dentists office. How can you do that? and it paid off? I suppose thats what you are saying, did it slacken off after a week or 2 or just dizzy for months? I suppose everyone is different. Thanks again, Dwayne

    Hi Dwayne, I was willing to go through the gates of hell if it meant I was going to save my hearing. I did go through the GOH. One of the first episodes was when I was driving and had to pull off road and puke my guts out. Many times during my work day I would be overcome with that terrible fracked-up feeling of oh no, can I finish my hour of singing. Many times when I did finish my hour of singing I couldn't get out of my chair for an hour or so and then I would stumble and wobble like a bad drunk. I adopted a method of pretending I was dancing my way across a parking lot. Once at work it hit me so hard I had to go into a closet for three hours. Of course, every time it hit me the best thing I could do was go to sleep.

    The frequency of vertigo lessened after about a month. But, I never knew when it would hit. The severity also lessened. I really only puked the first week. After that I would try to find a place where I could sit or lay down.

    I do not remember how long it took before the brainfog left, but a good guess would be about 3-4 months. I think if I had been on valacyclovir from the beginning I would have had relief faster. But, I don't know for sure. I was on acyclovir for 5 months before switching to val.

    I have been vertigo free for four months, but I do experience periods of uh-oh this feels like I am going to have vertigo, but I don't.

    My hearing is so much better than it was for 9 months last year. I don't get all the sqeaking and squaking noises or the hammers banging on pipes noises.

    I still have tinnitus, but that's the least of my worries. I'm pretty good at ignoring it.

    Be strong my friend. Good Health to you!
     
  15. dwaynehoover

    dwaynehoover Member

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    Thanks Santa! that is very interesting and GOH is Gracek right?
     
  16. Vicki

    Vicki Guest

    maybe he means JOH?
     
  17. Vicki

    Vicki Guest

    How's it going on the reduced antivirals Dwayne?
     
  18. dwaynehoover

    dwaynehoover Member

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    I am not well. After reading Santas post, maybe I should try 1600 mg a day? For now I will stick with 800.
     
  19. Vicki

    Vicki Guest

    if you are not getting worse on 800 mg (die off effect) then try 1200 mg if we are talking about acyclovir. I would not jump from 800 to 1600 (you are not at the level yet where the antivirals can suppress the virus.)
     
  20. Vicki

    Vicki Guest

    also make sure you take them evenly throughout the day so 1200 mg would be 3, 400 mg pills a day. So take 1 every 6-8 hours, acyclovir last 6-8 hours in our bodies. and see if you get worse on that after a week or so if not try 4, 400mg a day(1600mg) etc etc
     

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