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My update,,maybe some hope

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

  1. David Ash

    David Ash New Member

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    How did your progress go with the what you were on, did you get a continuation of cessation of dizziness/vertigo?
     
  2. Rgv

    Rgv Member

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    Mine started out with one vertigo attack, then I had dizziness 24/7 for about 4 months. Went on JOH, b5,b6, and antivirals and have been free of dizziness end May, most of June. A few short episodes, but mostly gone. I have cut back on Antivirals so will report back.
     
  3. Fisherman42

    Fisherman42 Active Member

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    Good to hear RGV!
     
  4. David Ash

    David Ash New Member

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    It will be interesting to hear how you go on, Why have you cut back on the anti virals, My impression is with anti virals a a maintenance dose needs to be maintained as the anti virals do not kill but rather suppress.
     
  5. Rgv

    Rgv Member

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    I wanted to see how lysine does on its own. If I start to see symptoms again, I'll go back on antivirals. It could be that I have to.
    Some people who suffer from depression don't do as well with antivirals, that being me.
     
  6. David Ash

    David Ash New Member

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    Sorry to hear that you have problems with the anti virals. I also hear that Olive leaf extract is also an excellent natural anti viral and it does target Herpes from what I have read.
     
  7. Rgv

    Rgv Member

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    Olive leaf extract is in my daily supplements as well
     
  8. David Ash

    David Ash New Member

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    Wow thats great, do you think it is helping?
     
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  9. Joney

    Joney Active Member

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    So we are back from our trip and happy to report it was a success! I was concerned about the 4 hour flight, but I wore my husband’s noise cancelling headphones and they worked great! I was suffering with a head cold, but it didn’t keep me down. We did a lot of hiking, exploring and went out to eat with very little problem. We got home last night and the only thing I could complain about is that I am exhausted. Ha! I need a vacation from my vacation. So glad I went and didn’t let my fears take over.
     
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  10. Rebecca

    Rebecca Member

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    Hi folks, I have a few questions. Thankful we have this forum to turn to, as it seems the medical field and researchers aren't convinced, even though there are thousands of us suffering, that this disease is worthy of much of their time. Anyway, in regards to anti virals: My ENT is willing to have me try them, but hesitant especially of high doses. I was on Valacyclovir 500 3X day. We talked about how some people react better to certain brands, so to see if it helps he switched me to Acyclovir 800 2X day. I read here where some of you are taking 3000mg a day, and wondering if you tried lower doses first, then when to a high dose because the lower dose wasn't working? If so, did you increase the dosage on your own? Also, Some of you are using JOH and Vit. B5 & B6 at the same time as using the anti viral. Did you try things one at a time, or just go all in, even though you would have no idea what is really helping? On a different note, my ENT is talking about maybe sending me to the city to see a Neurotologist (sp?) which I know could lead to surgery. I have read on this forum about people who have had success with laby's, even though there were varying degrees of recovery times. I actually got a little excited about that possibility after reading the stories. I've had MM for 19 years and the MM ear (R) has little to nothing as far as hearing goes. But, I am also experiencing low tone tinnitus now in my L ear, which might mean this crud is going bi-lateral. A Laby in the R ear, and all the things to deal with and expense, and then to have the MM in L ear start me back to vertigo,etc..... Have any of you who have had the Laby, had bi-lateral MM?
     
  11. June-

    June- Well-Known Member

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    I took 400 5 times a day with acyclovir. It is important to spread it out evenly through out the day so maybe even the same amount in 400 mg pills taken 4 times a day might be more effective.
     
    Last edited: Jul 13, 2019
  12. AnneT

    AnneT Active Member

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    I also have tinnitus in my good ear, for about a year. Hearing and VNG were still normal on that side a few months ago. I’m hoping it’s not the ear, maybe just the brain playing tricks on me. But if I do go bilateral, I’ll do what it takes to get vertigo free - gentamicin, VNS or laby; cochlear implant, lip reading and technology; canes or wheelchair. And Bulldogs posted about a new vestibular implant too!
     
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  13. Rgv

    Rgv Member

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    Hi Rebecca,
    I can only relate to supplements and antivirals. I went all in on the ones you posted because I couldn't wait for the 24, 7 dizziness to subside. I have gone up and down on antivirals but havent been feeling as good on 2000mg so going up to 3000mg. Hope that helps.
     
  14. AnneT

    AnneT Active Member

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    In December, I blasted myself with everything I could get my hands on - most of joh, multiB, acupuncture, antivirals, Daith piercing for migraine prevention. After a few weeks, I had nearly a month vertigo free. Then it started up again with a veangance.

    I tried Migraine prevention meds (nortriptyline) but had side effects. I tolerated diamox. Epival (valproate) at low dose may have helped decrease the severity of the attacks, but even low dose was making my liver tests unhappy.

    I’m glad I tried all the pill and alternative stuff, to know I’ve tried everything. But, on the other hand, they delayed my getting on with procedure options, and so in a way prolonged my suffering. It was time (overdue!!)
     
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  15. California Sun

    California Sun Active Member

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    Because of the remitting/relapsing nature of this diisease, it can be difficult to determine if something actually was helpful or if it was the disease going into a remission on its own.
     
    • Agree Agree x 2
  16. Rgv

    Rgv Member

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    Mine actually went into remission middle May until July 11, so 2 months.
    Has come back again, but not quite as intense but Im definitely not right. Just dizziness, not vertigo which was never my issue anyway.
    Anyone else experience this ? I'm kind of bummed out, thought I might be in the clear to be honest.
     
  17. California Sun

    California Sun Active Member

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    That's what I've been experiencing for about the last three years now. Before that, I was having years-long remissions, and the flares I was having weren't severe or long lasting. But the last 3 years, the flares have been much worse and longer lasting. The last remission was last September, and it lasted until mid-February. Since then I've had nothing but problems. I felt overall better for the last several weeks and had hope this was finally coming to an end, but it came back with a vengeance yesterday. I feel somewhat better today, and the lightheadedness I experienced last night has mostly resolved. I am just so sick of this. I want my life back. I just wish there was some help, but there just isn't.
     
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  18. Dnrpn

    Dnrpn Member

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    Hi Anne, what were the side effects that you had on nortriptyline? How long were you on it for? How quickly did you notice it helping? My ent is wanting to try it next. I’m not really loving the idea since I’m trying to get pregnant but I need to see if anything will tame this crap!
     
  19. EmilyP

    EmilyP Member

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    I am on the same regime you are on except the olive leaf extract. I still have low high-sounding tinnitus, it is getting better but still here. Is the olive leaf helpful and how much do you take.Thnak you for your note nad encouragment. You hang in there as well... :)
     
  20. June-

    June- Well-Known Member

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    Emily, in my experience, it is not an on off switch no matter what you take. The ear takes time to heal. Like with mono which is also a herpes virus. Just look at the trend and keep doing what is working. Give it a little time.
     

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