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AVs for 2 years, relapse or slight bump in the road?

Discussion in 'Your Living Room' started by Gardengal, Aug 29, 2017.

  1. Gardengal

    Gardengal Member

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    Hey guys, haven't been on here in a while. I started AVs in spring of 2015 during a massive cluster of attacks. I started feeling better within days and a have only gotten better over the last 2 years. I have had a baby and have been running almost daily. I have been eating whatever and doing most anything I wanted. It was wonderful! I had tapered my Famvir down to a low dose (250mg/3x day) for about 4 months. I woke up yesterday morning with horrible pulsitile tinnitus and imbalance. The tinnitus is so loud I haven't been able to sleep. This is always a precursor to the major vertigo for me. I have upped the dosage back to 500mg/3x per day. I may be stressed, nothing big, just everyday stuff. I have eaten more salt but I think lysine/arginine isn't too off. Anybody had this? A fantastic run and then symptom return? I am hoping it goes away quickly. Unusually, before AVs, if this kind of stuff started I was in for months of trouble.
     
  2. Pupper

    Pupper Active Member

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    I used to say that. But then I learned that (for me) nothing is "always" a precursor. Which is a good thing. For instance, yesterday, all the signs showed a slow buildup to an attack, but it never came. It' helps to ease my nerves, knowing that signs of an attack do not HAVE to follow a conclusive course. I guess that's one good thing about the randomness of MM.

    I'm sorry about your setback Gardenangel.
     
  3. scott tom

    scott tom Active Member

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    Hi Gardengal,

    It's quite common to have some bumps in the road. Don't panic. Remember, the damage caused by the virus takes much longer to heal than suppressing the virus itself. You can expect to have a few bad days here and there.

    Just be sure to watch the arginine. Also, you might want to add lysine to your diet (1000 mg taken 3 x per day on an empty stomach).

    Stress, weather, allergies, colds and flu can all cause the same symptoms, so keep a journal to see what is happening.

    Lastly, check to see if the generic manufacturer of your AVs was recently changed. They are NOT all created equally.

    Best of luck! :)
     
  4. Gardengal

    Gardengal Member

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    Thanks for the encouragement guys. I'll let you know.
     
  5. June-

    June- Well-Known Member

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    Our ears suffer some permanent damage even when we have remarkable cures as you and i did. In most cases, our ears are never going to be 100% as strong as someone who never had this problem. They are our weak spot.

    Although it is tempting to see how far we can push it, it is better not to stress the immune system any more than necessary because we know where it is going to hit us, right in the ear. Do as the others said and try to tke it easy. If you do have an episode of some kind, do not give up, just get back to basics, do what you know works for you and stay positive.
     
  6. June-

    June- Well-Known Member

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    Hormone changes can be huge too.
     
  7. RedBird11

    RedBird11 Member

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    So sorry to hear about your symptom return. How long ago did you have your baby? My symptoms returned after the birth of both my son and my daughter... about 3 weeks postpartum. I had a rough time for almost a year after both before my hormones settled.
     
  8. ckdk

    ckdk Member

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    @gardengal - i was free from all symptoms for 2 years without taking anything. then all the symptoms came back and i started to take av and some JOH vitamins after reading this forum. it helped the vertigo alot but I also experiencing constant pulsatile tinnitus and imbalance. However, it does not always lead to vertigo.
     
  9. Gardengal

    Gardengal Member

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    I am still having the tinnitus. It comes and goes some. I was able to sleep last night. Still no vertigo. My balance is off and vision is distorted. Hoping this passes soon! Thanks for the replies guys! And my baby just turned one. :)
     
  10. scott tom

    scott tom Active Member

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    Happy Birthday, Baby! :)
     
  11. Gardengal

    Gardengal Member

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    So I did get a small vertigo attack. It was too bad to walk or lift my head from the pillow but not spinning. I am thankful for that. I am anxious. We were supposed to travel today through Sunday and now I am not sure whether we should even try to leave tomorrow or not. UGH! The other option is for my husband to go and one of our family members stay here with me and the kids. I don't like that option but feel extreme guilt that my husband will miss out on the festival. I hate being apart from him when I am sick. He knows what to do, etc when I am ill. My anxiety ramps up when he's not with me. What kind of life is that for him? Do y'all have any tips for getting braver and being able to handle these very scary attacks alone?
     
  12. June-

    June- Well-Known Member

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    No tips, just sending healing vibes.
     
  13. Gardengal

    Gardengal Member

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    We decided not to travel at all. We're are staying home and trying not to stress. The tinnitus and dizziness are still present. My vision is "off" as well. This gets better at night. This morning I have just had to stay in bed. Very off balance. I am on day 3.5 of the full famvir dosage again. I am wondering, for anyone that decreased the dose then got symptoms and increased, did it take only a day or 2 to feel better or longer? Thanks!
     
  14. scott tom

    scott tom Active Member

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    It seems that many people take a few weeks to get back in line. So just keep the course and be patient. :)
     
  15. Gardengal

    Gardengal Member

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    Thank you for the response.
     
  16. marie

    marie Member

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    Our baby is 21 y/o now but I remember how busy we were when he was in his first year and of course the joy. I too am more dependent on my husband now and don't really like when he goes out of town like he is now but I also like some aspects. I have the house to myself, I do more things that I enjoy rather than watching tv with him at night. I just bought yarn for an afghan :)
    I hope that you feel better soon. For me, I feel crummy when I eat too much sodium, dairy, nuts and nut butter. I rarely take caffiene any more, which still amazes me.
    My best to u all and thanks for being here.
     
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  17. scott tom

    scott tom Active Member

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    I feel crummy when i eat nuts as well. They are really high in arginine, so i avoid them now.
     
    • Informative Informative x 1
  18. Gardengal

    Gardengal Member

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    Had an attack this morning with slow spinning. I am freaking out a bit.

    Do y'all think that the av could still kick in or do you think I should be looking at other treatments? I honestly thought I was done with this forever so this is a bit of a kick in the teeth.
     
  19. Pupper

    Pupper Active Member

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    I'm sorry. It's such a let down, after you've been doing well. Hope naturally builds...then you're brought down hard.

    In my layman's opinion, if I were you I'd step it up to gentamicin injections. If they don't work, have a VNS. Pills and diet didn't work for me. Then gent didn't work for me, so I'm having VNS in Sept. I'm tired of screwing around.
     
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  20. scott tom

    scott tom Active Member

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    I'm sorry to hear that. When deciding whether something is working or not, you have to ask yourself, "Is it as bad as it was before i started the treatment?" If it is as bad, and there's no relief in sight, then the AVs might not be the answer.
     

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