Discussion in 'Your Living Room' started by byron, Nov 18, 2007.

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  1. Laurie

    Laurie New Member


    Do you only take Acyclovior when you have symptoms? Like say if you get a cold sore, or if you have an vertigo attack? I'm going to stop, but I don't know if I should go 2 weeks on and 2 weeks off, or go monthly, or just when I'm starting an attack? But it's helped me, and I don't want another attack, I'm almost deaf in the right ear, and the other has tinnitus as well, but I haven't lost as much hearing in the left ear. I know if I have another attack my hearing will be damaged even more. I thought the whole thing with the Acyclovior was to control the virus from recurring, and without the daily use of the drug how can that be maintained?
  2. June

    June New Member

    I am curious about the virus theory. Is it that we had a virus sometime in the past, it did damage and now the virus is gone and the damage is done or that the virus is currently still operating and that the anti virals stop future damage as well as symptoms we currently exhibit?

    Last visit the dr acknowledged that cmv (which I had in 2006) was defintely known to cause damage to the auditory nerve and noted that in his letter to my family dr but did not prescribe or mention antivirals. He did order the ABR.
  3. Caribbean

    Caribbean New Member


    I haven't had the need for Acyclovir for over a year now! In the past when I would see a cold sore appear on my lips Id know that my defences were down and that would be followed by the MM symptoms reappearing, so at that time I would start on the Acyclovir regime all over again and usually within three days be back into remission...

    Hope this helps :)
  4. carolanne

    carolanne Lily

    Dr. Gacek keeps patients on it even longer. First a 3-week trial at 2400mg, then one month at 1600mg, then indefinitely at 800mg. I go back to see him in a couple weeks so I'll let you know what he recommends. I am at the point of taking 800mg once a day.
  5. byron

    byron New Member

    Well... it's been 2.5 weeks, and although I'm not cured by any means, there has been much improvement: all symptoms still active but noticeably reduced (there are simply more 'good' hours of living).

    My script ends on Tuesday and I'm seeing my doctor that same day as well. My concern is going off the drug - I still feel I need to take acyclovir for a longer period of time to see if things get even better, but I'm worried about over taxing my liver/body. I want to go to my doctor with a plan..... what are my options? take a maintenance dose? stay on the 2000mgs for a couple more weeks????


  6. Caribbean

    Caribbean New Member

    Hooray byron :) Some people report that they do need to stay on the regime for a longer period of time in order for it to take effect properly.

    Since your feeling better and doing so well (with your Dr's permission) I would stay on the Acyclovir another two weeks and then perhaps a maintenance dose of say 400mg daily for a month.
    Just my thoughts.......Very happy for you! :)

    PS: You might also want your Doc to do a liver function test...
  7. byron

    byron New Member

    Thanks for the advice, Larry. I'll take it to Doc and see what he thinks - seems very reasonable to me.

    I'll keep you all posted!

  8. Caribbean

    Caribbean New Member

    Thanks byron, let us know what you're Doc says and how you are doing... :)
  9. dizzycat

    dizzycat New Member

    I took about 4 days of valtrex, then stopped. the next day I got my first medium/major spin in quite a while. I havebeen talking my meclizine all week thanks to lingernig spins. This sucks. Not sure if it is the stress,t he remnents of the HSV outbreak or what. The valtrex gave me gorrible side effects. Needless to say it has been a bad 3 weeks. :(
  10. Caribbean

    Caribbean New Member

    For some reason many people have trouble taking Valtrex and switch over to Acyclovir, seems to be easier on the system.
    However if you have quite a few Valtrex and want to use them up, maybe the break in between will allow your system to handle them now.
  11. carolanne

    carolanne Lily

    Valtrex made me dizzy as well, but it stopped when I switched to acyclovir!
  12. Caribbean

    Caribbean New Member

    How are you doing now Carolanne?
  13. carolanne

    carolanne Lily

    Larry, Thanks for asking! I have not had vertigo since starting the acyclovir! Still have horrible tinnitus, hearing loss, wicked noise sensitivity. I recently returned to work as a teacher and have had a few days feeling lightheaded (stress?) and sort of like something might happen. But it never has, and I am trying to sort out if it is from an AD I am trying.

    Overall, very happy with the results, wish it helped all the other stuff. I see Dr. Gacek in a few weeks.

  14. tm53

    tm53 New Member

    So, Doc wants to do Gent due to increased fullness and fluid in left ear, balance changes.

    Thinking about asking to try the Acyclovir regimin first. Think it'll help? Just started increased loss in "good" ear couple of days ago, already have HA in that ear.

    Been thru 2 Prednisone tapers in the last few months.

    Waddya think?
  15. carolanne

    carolanne Lily

    Acyclovir will only help vertigo and stop further damage, it won't get rid of the fullness or hearing loss. That has been true for me. If you are having vertigo, I'd give it a try.
  16. carolanne

    carolanne Lily

    I have also had the gent done - and it also did nothing for the fullness or tinnitus.
  17. Caribbean

    Caribbean New Member

    This is also my story, acyclovir has stopped the vertigo...but the tinnitus remains 24/7.
    To be free of the vertigo is great!, you can get on with you're life and learn to live with the "T" until something comes along for that.
  18. tm53

    tm53 New Member

    I just want to put the brakes on the hearing loss that is progressing on my good ear, like, right now.

    Also stop the vertigo though I have been blessed in that I seem to get like 2-3 attacks per year of the rotational vertigo, thank you God.
  19. Laurie

    Laurie New Member


    Well I stopped the Valtrex for a week and my joints are about 90% better...still my fingers are sore, but nothing like I was...but my ear is full and my nose stuffy and running....haven't felt like this since I started on Valtrex..So I started taking Valtrex again yesterday because I don't want an attack for Christmas...I have way to many people to take care of for Christmas....not to say I don't want any more hearing loss...and my tinnitus went a little crazy too...So I'll keep you updated on the joints...I'm going to ask for Acyclovir next time I see my Dr. I have over 200 Valtrex pills, and they are $5.00 each here...From what I read here, Acyclovir is much easier on your system...but until the joint pain. I've never had any problems with Valtrex
  20. Caribbean

    Caribbean New Member

    Laure, their is a good chance that the Valtrex will be OK now giving you the opportunity to use them up, good luck, have a great Xmas spin free and be sure to keep us posted As too you're progress :)

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