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Day 1 of Valacyclovir... looking for resources to learn about HSV

Discussion in 'Your Living Room' started by MaryR, Aug 28, 2019.

  1. Aug 28, 2019 #1
    MaryR

    MaryR New Member

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    Hi fellow MM friends,
    Hoping everyone is having a healthy and happy week.
    After a horrible summer filled with violent vertigo episodes on an almost- daily basis, I finally got my prescription for valacyclovir today and just took my first dose.

    Like many of you, I have found that the "mainstream" first line MM and Vestibular Migraine approaches that were prescribed by my ENTs (currently on my 3rd ENT) and Neurotologist (on my 2nd one) just made my symptoms worse. LOSO, diuretics, Amitryptyline, low histamine diet, no caffeine, no alcohol... I failed miserably and I'm at an all-time low in terms of frequency and intensity of vertigo episodes. Finally, my cardiologist agreed to give antivirals a go after I presented him with a binder full of research, and a few frightening videos of my nystagmus that looked like something out of The Exorcist. (If I were feeling better I might get a chuckle that my heart doctor prescribed my Herpes medicine for my inner-ear disease, after 3 ENTs and 2 Neuros would not! lol).

    THANK YOU to everyone who has taken the time to post on this forum. Your personal stories, the anecdotal evidence of your successes and failures, and the research, journal articles, and vast knowledge base that you all have shared has been so incredibly helpful. I also just recently started JOH as well as B5/ B6, thanks to the info on these posts. You all have no idea how much I appreciate the gold-mine of information I have found on this site. I've spent every non-spinning moment over the past few months reading everything I can get my hands on. I'm cautiously hopeful that I might find some level of success and a tiny bit of relief of my debilitating vertigo on an antiviral regimen.

    Question.. the science geek in me is fascinated by the viral process and the science behind anti-viral mechanisms Can anyone recommend a place to find good research or journal articles that I can read to obtain a better understanding of the nature/ make-up/ life cycle/ replication/ hibernation of the herpes virus? I've quickly learned that I cannot be a passive patient... I need to educate myself in order to be an effective advocate for myself and my health. Any advice on good places to start would be greatly appreciated.

    Thanks again,
    Warmly,
    Mary from NYC
     
  2. Aug 29, 2019 #2
    teesdale

    teesdale Active Member

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    Good luck with the A/V, Mary. A few months ago I would have said it is the best thing since sliced bread for Menieres but lately I've been right back in the thick of symptoms. I'm beginning to think that relief is a constantly moving target.

    Anyway, I'm sure you've read it already but the JOH regime/paper is a great place to start when trying to figure out the virus.

    All the Best.
     
  3. Aug 30, 2019 #3
    June-

    June- Well-Known Member

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    Good luck Mary. Not surprised about the cardiologist. I learned a lot from my eye doctor and my primary who were both more open to the viral connection than several neurotologists. I do not have a good link for you but i bet mr google will help you on that. It’s just that so much is not yet known about human herpes viruses ... i would say my own personal experience leans towards the perfect storm theory of the immune system being hit by several things simultaneously. I did notice in the years right prior to and right after the onset of hydrops, i was also assaulted by cmv mono (h herpes virus 5), epstein Barr mono(i forget which hhv), shingles (reawakening of the chicken pox herpes virus), and the two monos presented in the lab as my first exposure to the virus in question though the drs suspect that maybe i just am not able to retain immunity for some reason at this point in my life. I have yet to ever have a cold sore though . But my point is, we might not be typical in our handling of these viruses and might not always fit the literature.


    For me the antivirals were a Godsend, but allergy shots and avoiding caffeine were factors for me, although i admit to playing fast and loose with the last one when i am feeling good.
     
  4. Aug 31, 2019 #4
    California Sun

    California Sun Active Member

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    May 23, 2019
    I just sent Dr. Gacek's article to my primary doctor along with a letter asking her if she would consider prescribing the antivirals to me. The antivirals are something I have not tried and even though it's another shot in the dark, I figure it's worth a try. I also mentioned the terrible experience I had with the ENT I had been referred to last year, and that I will not go back. So we shall see...
     

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