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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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    Here is my assessment about it working. It totally worked for ~2 years (20ish months). I felt great and did things that normal ppl do. I didn't give much thought to mm.

    I feel like it was AVs that brought that happy time about. Before them i had been ill since 2004.

    The only doubt I am having is that I don't really read a ton on here about ppl having flare ups on the AVs. Maybe I am not reading the right stories. This, to me, has been increasing in intensity over 5 days.

    So to answer the question: my last 2 years have been fab. The last week has sucked. I don't see where long term av ppl have sucky weeks. Does this make sense?? So should I don't know how to take it. I know you guys don't know either. I just tasted the freedom from this and feel pretty down about it being the monkey on my back again.
     
  2. tornadito68

    tornadito68 Member

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    Hi,
    I know most people will not like my suggestion but here I go. And yeah I know that steroids suppress the immune system.
    At this point of your relapse you have inflammation and I would take a dose of oral steroids.
    I have been doing great with the AV but I had a little bit of a relapse right before the start for the school year. I was panicking because I didn't want to be in my classroom all dizzy, with distorted vision, and full ears. I asked my doctor and he gave me a Medrol dose pack and within 2 days the stuffy ears, louder tinnitus, dizziness, and distorted vision was back to almost normal.
    It's been almost 4 weeks and I'm still fine. Oh yeah I just dropped to 1g x 1 daily of valacyclovir.
    Hope you feel better soon but I think that you need to diminish the inflammation at this point.
    Karina
     
  3. Melc

    Melc Member

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    Gardengal,
    I'm so sorry that you are experiencing relapse. I have had this frustrating set of symptoms for 20 years. During that time I had at least two periods of remission from the vertigo that lasted three years or longer. The other symptoms remained but were insignificant to me.

    I have no idea why the remissions occurred. I have no idea why the vertigo returned each time. I did nothing different. It's so frustrating trying to figure it out . That can cause stress which exacerbates our symptoms.

    I don't know what to say about the antivirals as I have never taken them. I just wanted you to know that it is possible to have long periods of remission while taking no meds.

    I hope this passes and you are feeling better soon.
     
  4. scott tom

    scott tom Active Member

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    I'm glad to hear that worked out! :)
     
  5. scott tom

    scott tom Active Member

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    Yes, there are people who have had setbacks after a year or two. It's usually due to stress, allergies, other viruses, foods, or even switching generics. Keep in mind that anxiety about it will intensify the symptoms. I know it's hard to stop being anxious. That's the vicious cycle.

    I personally would not quit AVs if they worked for two years. I would just switch to another type.

    I'm sure you've heard it before about lysine, but it works well for many. I also take high dose vitamin C for the colds, etc.

    I wish you the best! :)
     
  6. forevergrateful

    forevergrateful Member

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    I just tasted the freedom from this and feel pretty down about it being the monkey on my back again.

    Loved this line....And that taste is indeed so very sweet.

    I agree about not stopping the avs, but of course, i'm only in my 7th month on this course. I do know they have helped me and even though I too have had a setback, I trust that they will get my back on track. Good luck and please do keep us posted on what happens with you.
     
  7. I did fabulous on AV's for 6 months and then everything came back with a vengeance after a trip to Europe. I switched to Famvir from Valtrex, but things have never been as good as they were before the trip. I don't know if the 6 month remission just coincided with the AV's or the AV's just stopped working. It's frustrating as every person is different. Hang in there and keep trying everything you can!
     
  8. Gardengal

    Gardengal Member

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    Put me down for THREE slow spinning attacks yesterday. Each last under an hour (weirdly short) and no vomiting. Just couldn't move. Ear would pound loudly, almost as though it was filling up, the seemed to burst, and I would have an attack. Pounding stopped as soon as I would start to spin. Rinse and repeat x 2. Feeling hung over as heck today but moving around. Ear isn't pounding for now. So glad to have you guys to chat with. My husband is sick of it. :)
     
  9. Pupper

    Pupper Active Member

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    Yes, that fatigue is so troublesome. The wet blanket cliche has been around forever because it's so right on. It REALLY feels like that. What is the deal with actually feeling weight pressing down on you when you're depressed, or fatigued from MM? Gosh.

    When I feel like that, I think of that scene from Pulp Fiction. Where that girl overdosed and was laying lifeless. Then someone brought out a giant syringe and plunged it into her chest. She sprung to life like a pop-up toy. I want what was in that syringe! If only someone would burst through my front door and stab me with that thing!
     
  10. KellyP

    KellyP New Member

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    The tinnitus is so loud I haven't been able to sleep.
    [/quote]

    To take breaks from the tinnitus I listen to https://www.youtube.com/watch?v=Gm8oVClDrjc but there are other options as well if you search for "tinnitus relief." This particular recording (while I don't like the triangle or whatever it is) masks it 100% for me. Hope it helps you get some sleep!
     
  11. BayMama

    BayMama Member

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    I've definitely had relapses.

    Given all you must have going on hormonally and because the vision is involved, plus the shortness of the verigo without vomitting, I'd look at migraine triggers.
     
  12. BayMama

    BayMama Member

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    I also want to add that I'm getting better and better at knowing what to do when I have relapses--what a relief and big difference from where I was 4 or 5 years ago when I didn't know if this would ever end and had no idea what to do.
     
  13. yellow

    yellow Member

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    I think that is a very important point bytheBay. Experience teaches us to adopt better strategies and the fear of the unknown dissipates as we are better able to anticipate both the onset and outcomes of attacks. It becomes a known unknown rather than an unknown unknown.

    I am often reminded of the saying that “there is nothing to fear except fear itself”. Fear is stressful. Stress is bad for health generally, let alone Meniere’s where it is the enemy within.
     
  14. ckdk

    ckdk Member

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    hi Bythebay, lately my vertigo lasted less than a minute and without vomiting although after that usually I felt dizzy for the rest of the day. could it be caused by migraine?

    thanks
     
  15. BayMama

    BayMama Member

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    It sure could, ckdk. Find a list of migraine triggers and start looking for ones that are connected to the episodes for you. The list of triggers is a bit overwhelming, but fortunately we don't all have all of them.
    Also, if the episodes seem to be connected to moving you head, it could be BPPV, which is a great problem to have because it can be solved by doing the Epley Maneuver.
     
  16. Gardengal

    Gardengal Member

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    More attacks yesterday. By the bay- when you relapse, does it hit you this hard?

    I do believe this is mm bc my hearing has dropped and my tinnitus is bad.
     
  17. BayMama

    BayMama Member

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    Gardengal, I'm not sure how to answer that. I didn't have the same symptoms you did (haven't had the ear pounding thing), but last fall I was having these things where all of a sudden the whole world seemed to tilt dramatically out of the blue. I'd have to grab on to something not to fall down. And then I'd be dizzy, headachey and nauseous afterwards for hours. They came with more frequency then they even had before. That was pretty bad.
     
  18. Gardengal

    Gardengal Member

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    BTBay- How long did it take you to get back to normal?
     
  19. BayMama

    BayMama Member

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    Depends on the relapse. The really bad one I described in my last post was the worst replapse I've had. I believe that was a MM relapse caused by being under high stress, but not increasing my dose of anti-virals. It took a few months to get back to normal, but once I returned to the max dose of the antivirals those really scary balance events stopped pretty quickly. It took not only returning to the max dose of the antivirals but also increasing my lysine to get my ear less stuffy, decrease my tinnitus, and get rid of the general off balance feel.

    I also have had a relapse that I identified as a return of BPPV, and it just took one at-home Epley maneuver to resolve. And I've had a relapse that I identified as my eyestrain migraine trigger returning, and that took getting new glasses to resolve.
     
  20. Gardengal

    Gardengal Member

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    Okay, thanks for the info! I too have recurrent BPPV. I sometimes have to do an epley a day for a few days to get it to go away. I haven't had BPPV in over a year.

    I too had decreased my dose and have only been on the higher/max dose for about a week. My attacks aren't even lasting an hour anymore. They are quick spins that leave me dizzy and off vision wise for a while after. I have had 2-3 today. I need to start the lysine again. I had stopped that as well. Thank you for your replies. They give me a LOT of hope!
     

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