1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

My update,,maybe some hope

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

  1. David Ash

    David Ash New Member

    18
    3
    3
    Jun 14, 2019
    Swindon UK
    Hi, I see that you tried all the different meds etc. Did you have no luck at all with them? You say that you were getting on with Procedure options? Can I ask what you have had and has it helped?
     
  2. EmilyP

    EmilyP Member

    57
    8
    8
    Jan 6, 2019
    Florida
    June, so glad you responded. I wanted to thank you for the information you gave me about Acyclovir. I have been taking it 5 times a day and I think that has helped tremendously. Yesterday the tinnitus was a lot louder than it has been in a week. I am getting used to steps forward and backward. Yes I keep on the regime I have been on since January and have seen so much improve. Of course I would like to see it gone, but I realize that is not happening soon. It does seem the ear is very slowly to heal? Yes I am hanging in there and giving it time. Do you have any experience or thoughts on Olive Leaf. You have no idea, you probably do, how much your info on the antiviral helped me. Thank you!!!
     
  3. AnneT

    AnneT Active Member

    957
    182
    43
    May 14, 2014
    Alberta
    Don’t be scared off by my experience- I tend to get the rare side effects to psych drugs. Nortriptyline usually helps people sleep, calms the nervous system etc. For me, I woke up panicking and had nightmares. I only tried it for 1-2 nights.
     
    • Like Like x 1
  4. AnneT

    AnneT Active Member

    957
    182
    43
    May 14, 2014
    Alberta
    Serc made me drowsy.

    Diamox maybe helped - it at least made me feel safer when I had to eat higher salt foods.

    Epival maybe reduced the severity and suddenness of vertigo. But was messing with my liver.

    Nortriptyline gave me agitation, nightmares, insomnia.

    Brand name Valtrex 3000 mg for about a month, then gradually tapered to 1000.

    Joh, b vitamins, no apparent effect.

    I still take magnesium, B2, coenzyme q10 for Migraine prevention. There are good studies supporting these.

    Procedures: I’ve had one gentamicin injection, and may have a second today. I’m vertigo attack free so far. But, as expected, off balance- my brain is gradually compensating.

    I’m now off Epival and valtrex. I only take Diamox before restaurant food.

    I can’t say for sure at this point if anything helped or not. I’ve had Menieres for over 10 years, with spontaneous remissions (ie I didn’t change anything or take new meds etc) lasting months to 3 years. Recurrences have been equally random.

    Relapsing and remitting - makes it very challenging to know if something has “worked” - would I have been the same or worse without it? We need more prospective double-blinded studies.
     
    • Informative Informative x 1
  5. AnneT

    AnneT Active Member

    957
    182
    43
    May 14, 2014
    Alberta
    PS I am hopeful that the gentamicin is working.

    I’m more optimistic about life than I’ve been in a long time, because even if the the gent doesn’t work, I’m prepared to get a labyrinthectomy.
     
    • Like Like x 2
  6. Steve-

    Steve- New Member

    1
    0
    1
    Jul 14, 2019
    June,
    Steve here, from Pittsburgh. I might have secondary hydrops or MM or even labyrinthitis. 6 weeks ago it started. Mild dizziness, out of body feeling, ear fullness, progressing tinnitus. Tinnitus went bonkers 10 days ago. Convinced my ENT to prescribe antivirals based on your long version story from 2014. So first off, thank you so much. Your story was a big part of an answer to prayer. The screaming T backed off to a much quieter sound of crystals shattering. Not pleasant but tolerable if it stays. My questions are what is JOH? Did you take it or do you still take it, whatever it is? How long did you take the antivirals? Did you see Dr. Derebery? Have your symptoms been managed well since you posted your story? Thanks again so much!
     
  7. June-

    June- Well-Known Member

    1,659
    40
    48
    May 12, 2014
    Glad you are having success, Steve. I never tried JOH. The originator of this protocol of supplements is present on this forum. Yes, i saw DR Derebery for years for allergy treatment. I am doing well and take nothing now for CH and have normal hearing. Keep doing what is working. It takes a while for the ear to heal.
     
    • Informative Informative x 1
  8. Rgv

    Rgv Member

    98
    25
    18
    Mar 30, 2019
    So, I had a setback for about 3-4 days but back on track now.
    Been dizzy free outside of those days since May 15. Tinnitus is much less but still there, some days worse than others. I had 24/7 dizziness since Jan 2019 so a welcome relief...and no more brain fog
    Still taking JOH, valtrex, b5 b6, olive leaf extract ...started April 15.
    I think one has to be prepared for setbacks with Menieres, just part of it. Will try and post again in a month.
     
    • Like Like x 1
    • Agree Agree x 1
  9. Rgv

    Rgv Member

    98
    25
    18
    Mar 30, 2019
    Hey gang,
    Just a quick update.
    I got Menieres on Jan 6 2019. After many different doctor visits that were useless, I took matters in my own hands and started the JOH regimen and b5, b6
    Plus olive leaf extract and finally valtrex. To date, I've been free of dizziness since mid May. Tinnitus has calmed down a lot and no more brain fog. I have cut back on lysine and valtrex just because I'm not sure about taking valtrex this long. So far nothing to report that has gone backwards. I may stay on lysine. I have even eaten "some salt" with no harm but stay below 2000mg/ day. Keep in mind, this is all experimental and once I start feeling Menieres symptoms, I will reintroduce valtrex again.
    So far, symptom free almost 6 months but will keep you posted. Hang in there and definitely try JOH , b5, b6 and an anti viral. They saved me so far. I havent posted for a while but i do check in. Wishing everyone Peace
     
    • Like Like x 3
    • Friendly Friendly x 1
  10. wendy

    wendy Member

    164
    17
    18
    May 18, 2019
    Thanks for updating. Great news!
     
  11. Blakeh

    Blakeh Member

    84
    7
    8
    Aug 20, 2016
    Awesome news. Thanks fo the update! I’m glad you’re doing well.
     
  12. Marta

    Marta Active Member

    446
    27
    28
    Jan 26, 2016
    Soooooo happy for you!!!!
     
  13. AnneT

    AnneT Active Member

    957
    182
    43
    May 14, 2014
    Alberta
    Btw JOH recently posted that he no longer takes the supplements and remains vertigo free. Maybe they act to promote healing when things are active; maybe they are placebo. It would be great to have a proper study done.

    I have bottles and bottles of leftover Lemon Bioflavonoid if anyone wants them for free - to pick them up (Calgary) or pay for shipping.
     
  14. Philippa

    Philippa New Member

    4
    0
    1
    Nov 30, 2019
    Hi yes I have experienced that, I had a couple of months of no symptoms and then when it come back my symptoms had changed so that confused the hell out of my Drs.
     

Share This Page