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My update,,maybe some hope

Discussion in 'Your Living Room' started by Rgv, May 20, 2019.

  1. Rgv

    Rgv Member

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    Thanks to John, I have been on his regimen for over 4 weeks plus antivirals
    Also bennyhills b5, b6 dosage plus olive leaf extract. Lots of stuff to take. I did cut back on antivirals from 3000mg to 1500 mg because my mood swings , depression were increasing and I read Valtrex can do that. My symptoms are constant dizziness, brain fog, tinnitus, hearing loss , all since Jan 6 after vertigo episode.

    Anyway, since last Friday, May 17, I have not had any dizziness which I had every day for 4 months straight. Brain fog lifted too which is a byproduct of dizziness.
    Tinnitus a bit better, not sure on hearing until I get checked.
    So, all in all 3 really good days. Not sure if this is too early to post but thought maybe it could be helpful. I'll keep updating as I go along.
    Thanks to all who have contributed here, especially John.
    God bless
     
    Last edited: May 20, 2019
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  2. Tony Wilson

    Tony Wilson New Member

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    Great to hear! You and I are tracking closely on AVs with our timeframes so I've been keeping tabs on you. Still good on my feet but too early to tell overall but very happy for you brother. Also happy you and many other newly diagnosed discovered this forum so quickly. What a godsend.
     
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  3. Rgv

    Rgv Member

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    Yes sir, much support here and greatly appreciated
    Keep us posted on your progress
     
  4. EmilyP

    EmilyP New Member

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    Wonderful news, keep on it. I believe it will make a difference. I am on all of the above for 6 months June 1st. Everything has gone away with me except the tinnitus. Which that can be minimal at times, but does come back loud at times. It has never gone away. But I can manage and be functional again so I am happy.

    Has any tried CBD, for any of this? Just curious. Hang in there ..
     
  5. Rgv

    Rgv Member

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    So need some input from the gang here
    Its been a week and I've gotten better but I have moments not so great, especially last 2 days. Do you avoid going on a trip this weekend for fear of not feeling so good or do you suck it up and just go? I just don't want to ruin it for others and if brain fog hits, I'm usually done for the day.
    Thnx for any responses
     
  6. Dnrpn

    Dnrpn Member

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    That’s great success :)
    I’ve been taking about 20mg of cbd under the tongue for a month... I haven’t noticed any benefit so far.
    How long were you taking the antivirals for before you noticed a difference? It’s been over a week for me and I’m having some of the worst days right now.
     
  7. Dnrpn

    Dnrpn Member

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    I personally would base my decision on where I am going/itinerary and who I am going with. Oh and I suppose how much money I might be “wasting” if things stay bad. Would I rather feel like crap here or there? However, a good day might start tomorrow and you’ll be kicking yourself :) tough call though for sure!
     
  8. EmilyP

    EmilyP New Member

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    Hi, for any antiviral difference it took about 3 months. I did have a few very bad weeks in the beginning, but that tapered off. The only symptom I have now is tinnitus. Today has not been a good day, yesterday I had very little ringing. Go figure!!! I wish you well :) it’s a awful disease.
     
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  9. Clare

    Clare Active Member

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    You try not to let MM rule your life, so you arrange for ways to bail out on activities if you have to for a few hours, but you go ahead with the trip, taking along your rescue meds. Skip triggering things like grocery shopping, but lap up the enjoyment with friends as much as you can!
     
  10. redwing1951

    redwing1951 Active Member

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    I agree with Clare. Don't allow MM to control your life. Go and enjoy your weekend. One day at a time and learn to deal with your symptoms if they appear. I have had times when I have had to leave events early due to MM or I have had to lay down during family functions but I always try to live my life and attend all that life has to offer. I hope you decide to go on your trip. Don't allow fear to block what could be a great weekend.
     
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  11. Rgv

    Rgv Member

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    Thank you for the input folks, much appreciated. I will try my best. Waiting for some last min trip plans and the will decide.. thank you
     
  12. AnneT

    AnneT Active Member

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    Yup, if you can have an exit strategy, medications that help, and you want to go then go. But if you don’t actually want to go, and it’s just to please others, consider relaxing at home. It’s a tough call!
     
  13. Joney

    Joney Member

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    rgv - please don’t let this diagnosis stop you from living your life. My concern is that you are letting your fears of what MAY happen stop you from possibly having an awesome time. Trust me when I say I had the same thoughts creep in my head. My husband and I have been planning a trip for our 25th wedding anniversary. This was all before this last bout of craziness happened back at the end of March. I’m still not feeling 100%, but certainly better than I did at the beginning of this. I seriously have been giving thought to not going. Then I thought....are you kidding me! Your husband worked hard to make this a great trip. Do you really want to spend that week sitting at home when you could be out maybe having the time of your life. Then I told myself....no, no I don’t. I told you in a previous post that I have an anxiety disorder and have let that rob too much of my life. No more!!! Please listen to the others on this thread and go. Just make sure you take your “safety” tools with you. I encourage you to go live your life and don’t let this diagnosis stop you.
     
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  14. Rgv

    Rgv Member

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    Thank you for your story/ input Joney. Of course panic always creeps in. What if I get dizzy, brain fog, etc. How good of a time can I possibly have when I'm so spaced out? So I have been weighing the options,,,is it worth going and feeling crappy or do I roll the dice?
    I guess worst case is my wife can send me to a mental ward,,,lol
    Something i would have embraced just a year ago seems so hard now.
    It's very sad but I guess we all keep fighting . I did lower my antiviral dosage Sunday but went back up 2 days ago . That might have been a mistake as I was doing pretty good for almost 5 days on 3000mg for about a month plus JOH.
    Thank you
     
  15. Fisherman42

    Fisherman42 Active Member

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    Keep on keeping on man, seems like your seeing some hint of progress. Antivirals were a god send.
     
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  16. Rgv

    Rgv Member

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    So an update,,, I ended up going on this trip

    Saturday, woke up just ok but felt something was off but still went.
    Trip was fine. I went to a little league game at 4pm as a spectator and brain fog hit me for 3 hrs. No trigger, just happened. After 7pm , was clear again. I did have salmon Friday night and it's pretty high in sodium, like 600 mg so maybe that.

    Sunday was great, all day by the ocean, no dizziness, brain fog etc.
    Very relaxing and just closed my eyes and listened to waves...amazing how much more you appreciate the sound of waves now. Would have loved to have a drink on the beach but I'll take it. Sunday night went to a casino , no gambling, and my head didn't like it as much but stayed for about 1.5 hrs with no major setbacks, slightly uncomfortable. Monday, short trip into town to sightsee and just got home.

    All in all, not so bad. Glad I went even though just 2 nights. Next trip is 3 nights via plane in Sept. so baby steps. That one scares me.
    I am also back up to 3000 mg valtrex. Thanks for the encouragement from those on here,,much appreciated.
     
    Last edited: May 27, 2019
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  17. Joney

    Joney Member

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    Good job! I’m so glad you went, and I’m sure you are, as well. The trip I told you about that my husband and I are taking is for a week, a four hour plane ride, and coming up in a couple of weeks. I am very nervous about the whole thing, but determined to make the best of it. I went out and got a pair of Earplanes, in hopes it will help with ear pressure. Honestly, I feel like a lot of this is the anticipated anxiety of what MIGHT happen. Again, good job!!
     
  18. Rgv

    Rgv Member

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    I agree Joney, we get ourselves so worked up in anticipation that we are actually hunting ourselves and exacerbating the symptoms. Try to relax and ask yourself what's the absolute worst that could
    happen? Even if you have a bad day, part of the day, you will recover. That helped me get through it. Keep us posted on your trip.
     
  19. Jacqui

    Jacqui New Member

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    Hi Emily P, I use Endoca CBD 3%/300mg as an anti-anxiety therapy, I only take it though when I feel stressed or anxious not on a regular basis as it is expensive. One drop sublingually up to 3 x daily. I do think it works (may just be a placebo effect but as my GP says, if standing on your head in church wearing pink knickers helps you, then do it!). I do prefer using hemp oil to any prescribed anti anxiety medications like Xanax. No drowsiness or side effects that I have noted, it just tastes ghastly like licking an Irish peat bog.
     
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  20. Rgv

    Rgv Member

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    Hi gang,
    Quick update...It's been 8 days with no dizziness, just some pockets of not feeling the best, tinnitus has calmed down ...just not nearly as loud.
    It's funny, but when you start feeling better, you forget how bad you actually felt.
    Still on valtrex 3000mg, JOH, b5,b6 and olive leaf extract
    Stay on course if you're on any of these.
     
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