To JOH and those on anti-virals

Discussion in 'Your Living Room' started by bubbagump, Apr 21, 2014.

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  1. bubbagump

    bubbagump New Member

    When I asked my doc about anti-virals, she said that for me it's probably not a virus that's causing it. Says the "pattern doesn't look like a viral attack".

    So it seems like she's not against using anti-virals, just saying my pattern doesn't fit. I didn't really push for answers as I had other more pressing stuff I wanted to ask.

    So I wonder, for those of you are on anti-virals and have spoken to doctors who support it (gacek, house, etc), did they mention some Meniere's people are more suitable for anti-virals than others, or if they can tell the symptoms likely are caused by a virus?
  2. nicmger

    nicmger New Member

    bubbagump - what is your "pattern" that she refers to?
  3. CarolineJ.

    CarolineJ. New Member

    To be honest ... what is a pattern? We are all different. Unless these Doc's live in your body they really have no idea what the pattern really is. Just my opinion.

    My Doc's wouldn't prescribe AV's but if they had I would have tried them. Would have been a simple thing to check off the list of things that may help.
  4. bubbagump

    bubbagump New Member

    to be honest I am not sure, I didn't ask for details....blame it on brain fog? haha.

    i think she meant that my symptoms generally fluctuate, but maybe not to the extreme like a viral attack.
  5. Donamo

    Donamo Guest

    I think it is your decision to make, not hers.
  6. Juz

    Juz New Member

    I agree, particularly given that the risks associated with an AV trial are so low.
  7. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    Your doctor sounds like mine so either you have to live with it or try a new doctor. I at leas got the names of several others in my area that I could consult if I need to. Fortunately, JOH and low sodium and diuretic have seemed to help me significantly. God only knows if that will continue and for how long.
  8. bubbagump

    bubbagump New Member

    are you taking the full regimen or parts of it? how's your tinnitus and fullness thus far?
  9. angrychicken

    angrychicken New Member

    The thing that bothers me the most about the state of the art in MM medicine is that the generally accepted answer to "what is causing my symptoms" is "we don't know". But when asked if it could be viral, the answer is an emphatic "No". Either they don't know, or they do know - it's disingenuous to hold both positions. I don't understand the reluctance to try AVs.

    It sounds to me like your doctor is talking about of her a$$. WTF does a viral attack of the inner ear look like anyway? If there was any real answer to that question then there would be tests and guidelines for prescribing AVs.
  10. bubbagump

    bubbagump New Member

    I suppose a viral attack usually attacks quickly and viciously, then symptoms go away for a while. I'd had viral attacks on my eyelids (small blisters, no big deal) before as a kid, and they usually go away after a week or two. For my meniere's it's fluctuating but almost constant symptoms of fullness, hearing loss, and tinnitus. Is does seem different than other viral attacks?

    yeah I'd like to think she's not talking out of her ass though LOL....haha that cracked me up, I was picturing jim carrey in ace ventura.

    anyways, on paper she seems like the best doctor in the world...harvard, magna cum laude, harvard medical school...etc etc..and also she's a fairly nice person too...i'd probably stick it out with her for a while.

    if I can get my hands on AV's, should i go ahead and try it myself? I understand this is at my own risk. And I've taken anti-virals before, I don't seem to have any negative reactions.
  11. angrychicken

    angrychicken New Member

    I'm firmly convinced my case is viral. The initial onset of my symptoms was very sudden (SSNHL), but they lasted for months. I had AVs at home that I tried on a whim, and my symptoms disappeared - until I ran out, then my symptoms returned. I made an appointment with Dr. Gasek and got on the proper dose of AVs, and then my symptoms went away again. For several months my symptoms fluctuated but never completely went away until I was on the AVs.

    If you can get your hands on AVs, then I don't see what you have to lose by trying them, especially if you know you tolerate them well.
  12. Vicki615

    Vicki615 New Member

    When I saw my Allergist last December and told him about the viral theory cause for MM his response was, that makes a lot of sense. I was so pleased to hear him say that.
  13. bubbagump

    bubbagump New Member you said when you're not on AV's, your symptoms were constantly around, fluctuating but constant?
  14. angrychicken

    angrychicken New Member

    Before I was on AVs (the first time) and again before I got on the proper regimen via Dr. Gasek my symptoms fluctuated, but in a fairly predictable manner. It would start with barely audible tinnitus in the low frequency range as well as a little sound distortion. Over the next 18 hours or so my hearing would decline, distortion and sensitivity would increase and my tinnitus would increase in volume and pitch (getting higher pitch). When the tinnitus reached a volume that sounded like a jet engine was parked next to my ear, my ear would get "full" and my hearing would take a nose dive. Also, the side of my face would get numb. I would get wobbly (no spinning, just off balance) and the tinnitus would disappear. Over the next few hours the fullness would decrease and I would return to "normal" - still some hearing loss, but no other symptoms. Then it would start over again - maybe after a few hours of relief, or maybe after a couple of days of relief.

    I wonder if your doctor would say that "sounds like a viral attack"?

    Kind Regards,

  15. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    I started out with all of it. Now, 5 years later, I continue with the lemon bioflavonoid, vinpocetine, and l-lysine religiously. I also keep my Vitimin D level up, and take several natural anti-inflammatories.

    I have low level "hissing" type tinnitus 24/7 but it's usually not noticible when there is enough ambient noise. Fullness to some level comes and goes with the weather. Cold rainy weather sometimes causes some, but it's not that bad. It's quite possible that I've sort of "burned out". Most of my hearing in my right ear is gone. I can still hear if the source is relatively loud but it sounds tinny. My last dozen or so autiograms have been stable. I don't know of hand the Db drop in that ear, but I could look it up. My word recognition test in that ear runs about 40-50 percent. However, as I used to say all the time, I don't really care about the loss in hearing as long as never see another crawling on the floor barfing vertigo attack.

    It is often difficult to understand people in noisy restaurants or similar environments, but I live with it. I'm at an age where when I tell people I can't hear out of my right ear, they say "Me too only it's my left" or something like that. There was a guy we met two years on a river cruise in Germany. We had to make sure he sat on my left and me on his right because he was deaf in his left ear. If it was the other way around, we could hardly talk to each other. I have an aunt that's exactly the same way. Life goes on.

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