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Thank you to JOH and all who post here!

Discussion in 'Your Living Room' started by DianeD, Jan 3, 2020.

  1. DianeD

    DianeD Member

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    Is 7 weeks with no vertigo too soon to rejoice?

    My symptoms of tinnitus, fullness, and sensitivity escalated early in 2019. The doc advised taking Sudafed, then prescribed an antibiotic, then changed the diuretic. Then came the dizziness and severe vertigo episodes. No help from the doc's office---they said to go to the ER! (which I never did). I discovered this forum and started the JOH regimen of supplements in July. It didn't seem to help, but just having some hope that doing this could bring relief was enough to keep my sanity. I also tried some chiropractic sessions. Then based on all your comments, I started taking B5/B6 and asked my doc for an Rx for an antiviral...he prescribed Acyclovir 800 mg., 3x day, starting mid-October. (This doc acknowledged the Tampa, FL study! Now why didn't he prescribe this 2 years ago, before it all escalated with the vertigo???.) I had a remission from the vertigo for 3 weeks. I was dancing on the ceiling! The doc had me cut back to taking the Acyclovir 2x/day. Then I had a miserable week of vertigo episodes and 4 weeks of feeling "off" with the usual wonky feeling in my head, on the verge of vertigo, so I took Meclizine 2-3x day, every day and all the weird feeling in my head gradually disappeared! I was on a cruise for a week in that time, and everywhere I went I was devising an exit plan in the event of a vertigo attack! The doc wanted to start ear injections, but based on several posts here, advising to use caution, I opted to stay the course and wait. You are all so smart!

    Now it's been 7 weeks today with no vertigo attacks! Tinnitus, fullness, and sensitivity have all been much less bothersome. My hearing in one ear is down to 40% word recognition and the hearing aid can't be programmed with enough sound to compensate because I'm still very sensitive to higher pitch sounds, so that's annoying. I quit the Meclizine about 3 weeks ago, but I'm still taking the diuretic (Triamterine HCTZ), 1600 mg Acyclovir/day, plus the JOH plan, and B5/B6.

    Dare I rejoice and get back to dancing on the ceiling? I still live in fear of the sudden attacks, but this is the longest stretch of wellness I've had in a year. I want to thank JOH for presenting his plan on this site and for all his follow-up discussion, and to thank all who post on this site, and especially to all who responded to my earlier threads with advice and encouragement. I'm so grateful I found all of you! And my heart goes out to all who struggle with these miserable symptoms. May the new year bring new knowledge about this disease and new and better treatment options for all of us.
     
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  2. Wayne

    Wayne New Member

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    I hope it has worked for you. Although I have gone long periods without an attack only to have them come back. I have also heard of people who have not had any problems for years.
     
  3. Rich

    Rich Member

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    As Wayne said, I pray it works for you also and you never have another attack. In my case I may go 2 or 3 months without an attack and have a 2 or 3 week relapse. But the symptoms are always there, fullness in ear, tinnitus and brain fog for the last 15 years. Please be aware the a lot of people who are diagnosed with Menieres go into remission and never have symptoms again, hope your one of them, unfortunately, about everyone on this board that hasn't been the case. I hope your not one of us.....this isn't a club we wanted to join. Lol
     
  4. DianeD

    DianeD Member

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    So, you guys with periods of remission and then relapse, have you tried taking Meclizine daily when you start to have attacks or feel more like they are about to happen? I don't see anyone talking about that, but it seemed to ward off another attack. It doesn't work for me once the vertigo starts. I didn't try that trick until after I had 3 weeks of remission and then an awful week. I started taking Meclizine early every day when I had that first feeling of "woosh" across my head and then through the day another 1 or 2 pills. The days I took 3, I think it gave me a slight headache and made me a bit sleepy, but better that than the vertigo. I quit taking it now, but I'm wondering if I should just take one every day, even if I am feeling OK. Does that work long term for anyone?
     
  5. John of Ohio

    John of Ohio Member

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    Meclizine merely suppresses a few Meniere's symptoms. But it has no mechanism to turn off what causes those symptoms to arise --- which in most cases (not all) are caused by an active herpes virus infection of the inner. Physicians unfamiliar with the expanding understanding of the viral etiology (cause) of the majority of MM ("Morbus Meniere," older technical name of the disease) cases have no treatment recourse other than to throw things at the symptoms; things to suppress the dizziness, etc.

    But, of course, the disease continues, usually in expanding degrees. Destructive surgeries, in the end, are the only treatments that can be offered.

    Yes, in some, maybe many cases the immune system is eventually able to spontaneously suppress the viral activity; symptoms disappear. But more often, the symptoms progress, ever stronger.

    So glad to hear of your persistence with and use of both my regimen elements, the antiherpetic drug, and the B vitamins. You've taken a three-pronged treatment approach, with very encouraging results. Keep with it. Keep us posted on your progress. My best wishes.

    --John of Ohio
     
    • Informative Informative x 1
  6. Rich

    Rich Member

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    Took meclizine for over 2 years everyday 50 mg a day as my maintainance dose. But I'm a 59 year old male and all that antihistamine messed up my prostate...not that it pertains to you....messed it up so bad they thought I had prostate cancer. So turned into a double edged sword. Quit taking it and can say I haven't seen much difference. The only thing I've found so far to help with the vertigo is Valium when I know I'm having an attack. Doesn't stop it but seems to take the edge off of it a little. But I have this thing about taking addictive drugs, only have taken maybe 2 doses in a year. Usually just ride it out, a vertigo attack with me last 2 or 3 hours now. When I first started having them they would normal last 8 or 9 hours and usually 5 days or so to get my feet back under me.
     
  7. DianeD

    DianeD Member

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    Rich and Wayne, are you guys doing the JOH+B5/B6+Antiviral? And Rich, when do you take the valium? Once I know I'm having an attack, there's no way I could keep a pill down for a couple of hours. I have Zofran/Odansetron but I can't seem to get it down soon enough to help.
     
  8. Gardengal

    Gardengal Member

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    Diane, there is a pill called Ativan that is super tiny and dissolved under your tongue. It acts the same as Valium but you don’t have to swallow it. Might ask Dr for that.
     
  9. DianeD

    DianeD Member

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    Thanks for the tip. I will ask to have that on hand. The Zofran is an under the tongue pill, but it just doesn't work fast enough.
     
  10. Rich

    Rich Member

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    I do the the B vitamins , magnesium, D, and numerous vitamins. Doc wouldn’t give me antivirals. (No medical tests to prove they help.) But he did give me addictive Valium. Lol. As far as taking the the Valium I’ve had menieres long enough that I can pretty much tell what’s a dizzy spell and which is going to be a vertigo attack. A dizzy spell is just a dizzy spell when I have a vertigo attack my world immediately “tilts “ for lack of a better term. I know I have about 10 to 15 minutes to get to a “safe place” before I start throwing up , will put Valium under the tongue and let it desolve. Like I said it doesn’t stop it just takes the edge off it.
     
  11. DianeD

    DianeD Member

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    Rich, I only have maybe 3 minutes before "it" starts and the misery lasts for several hours until I can fall asleep. But I'm so encouraged with the antivirals. After I started taking them, I started to feel better in about two weeks, and the almost constant "off" feeling disappeared. Then after 3 weeks I had a major set-back week, just as people here had reported would happen! After recovering from that, and continuing the antiviral drug, I don't have the constant warning signals, so I think there is something to the studies that show a correlation between herpes and Meniere's, and I do think the antiviral stopped the vertigo and all the constant pre-vertigo symptoms.

    I had to ask my ENT for the antiviral, and I was surprised that he then brought up the Tampa, FL study, which people on this site have mentioned. I think it was done in 2014. So there is a medical test that shows, if not proves, the antiviral helps! I live in FL, so maybe the doc was tuned in because of the location. I didn't ask for the drug until I had 15 major episodes in about 5 months. I don't think there's much risk in taking the antiviral, so I don't see why it's not prescribed when symptoms are escalating, based on this study. So this stretch of 7 weeks seems miraculous to me. Take a look again at the detail about this study and you might want to pursue the discussion again with your doc because I know all too well that "riding it out" as you say, is miserable and depressing. We all need to keep on our docs to find what works. Too often, I think they wave us off until we beg for the injections which gives them something to do!

    I did ask my doc earlier about prescribing Valium or something similar and he would not do it! He prescribed a higher dose of the Zofran instead, which doesn't work. I'm going to ask my GP in my visit next month for a prescription of the Ativan that Gardengal recommended. And I hope I don't need it before then!

    Thanks for your follow-up. Here's to another 7 good weeks for both us us!
     
  12. recoveringoptimist

    recoveringoptimist Member

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    Congrats on this progress, Diane. As someone who has been newly facing Meniere’s over the past 6 months I love to read about the solutions that are working for people.

    I, too, just went on an antiviral. I’m only 9 days in so I haven’t seen any difference yet, but I’m optimistic.

    Your evolution of your symptoms sounds similar to mine. How long have you had Meniere’s, and how long did you have the symptoms of “tinnitus, fullness, and sensitivity” before it escalated?

    I had those three symptoms (diagnosed as endolymphatic hydrops) for nearly two years before an illness triggered an escalation. I wasn’t having vertigo but dizziness was a regular occurrence for me. Since I started taking B5/B6 I’ve gone two months without any dizziness. My hope is that the antivirals can get at the root of this thing and also take care of the fullness and generally resolve my symptoms, but I am so grateful to have discovered the B5/B6 post here and seen success with it.

     
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  13. DianeD

    DianeD Member

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    R. Optimist, you are fortunate to have found this site and that you took action based on the history of people in the know. You say you aren't seeing any improvement with the antiviral after 9 days. I went back to look at the log I keep. I started the antiviral on Oct 15, and I had another 2 vertigo episodes a few days later, then 3 weeks of relief and then the most miserable week with 3 episodes, the most severe one of all time being the last one. I think it was JOH that presented a discussion about how the antiviral drug can only work to suppress the virus when it is active, and that happens in cycles, which is the reason to expect set-backs when first starting the drug.

    My symptoms started in 2017 with hearing loss and tinnitus. The first ENT doc I saw was a P.A. She ordered an MRI based on the asymmetrical hearing loss. There was nothing to note with the ear, good news, but it showed, surprisingly, that I had a severe sinus infection. I always had some problems breathing which other docs attributed to allergies, so I would take OTC allergy meds occasionally. She prescribed a heavy dose of antibiotics and sent me on my way. About that time I had a monumental vertigo episode, but after taking the antibiotic, I did not have another, so I thought I was cured, except I had one-sided hearing loss, which the PA said was age-related (I'm now 68) and told me to get a hearing aid.

    A few months later, my symptoms escalated. I had tinnitus that sounded like the back of a jet engine. I have a friend who is a retired audiologist and she recommended a second opinion so I went to her more prominent doc. He diagnosed me immediately with hydrops, prescribed a diuretic, told me to get a hearing aid, and sent me on my way.

    2018 wasn't a bad year, in retrospect! I was bothered by all the symptoms and added some dizziness to the mix, but I had no idea it could get so much worse. In early 2019, the hearing loss got so much worse, and the sensitivity was so heightened that I couldn't even tolerate the music in church, and it's not that loud! I went on a cruise and had to sit at dinner with headphones on because the chatter in the dining room was unbearable. I called the doc from the cruise ship! He said to double the dose of the diuretic for a week--no help!

    Then the vertigo started in May, 2019 and I was bouncing off the walls with dizziness between episodes with waves of a very scary "wooshy" feeling in my head. People describe a "brain fog". Maybe this is what they mean. The doc's office told me to go to the ER to get IV fluids during an episode. I could not imagine what it would be like to be moved, so I never went.

    In June I found this forum and the wonderful people who shared their stories. In July, I started John of Ohio's diet supplement plan. It gave me a feeling of being pro-active and gave me some hope that an end could be in sight. Then in October I started the B5/B6 and the antiviral, so I don't know whether one or both are the key, and I continue the full JOH program. After I had the 3 good weeks, the doc told me to cut back the antiviral to 2 pills/day, or 1600 mg. Then I had the bad week with 3 episodes and another week of recovery symptoms. If I have another episode, I would go immediately back to 3 pills/day!

    Stay the course with your B5/B6, and the antiviral. Consider the JOH plan if you're not already doing that. People say it takes 4-6 months. I'm right at 6 months with that so I don't know whether it is a contributing factor to my remission period now, but I never had any adverse effects with any of it. Keep us posted on your progress and hopefully any good news you can share. We could all use it.
     
  14. recoveringoptimist

    recoveringoptimist Member

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    Our stories are so similar. I also had my initial symptoms of fullness and tinnitus come on following a severe sinus infection. I've always felt my Meniere's must be related to that and after discovering Dr. Gacek's studies and other attributions to viral causation, I am wondering if the sinus infection was connected to a virus I contracted.

    I went nearly two years of the hydrops symptoms before experiencing vertigo. As mentioned, I had pretty regular dizziness in the months following that initial episode but I've been very fortunte to not have any vertigo since.

    I did notice that my Valcyclovir is made by Mylan which people on this forum have noted seems to be a dud. I've reached out to my doctor in hopes she can direct my pharmacy to provide the drug from another manufacturer. At only 9 days in, I'm optimistic the AVs are going to be effective for me. I just don't want my first attempt to be on an ineffective version of it.

    JOH will be my next step but I'm trying to take a gradual approach in adding one supplement or drug at a time so that I have a clearer understanding of what is working for me.
     
  15. DianeD

    DianeD Member

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    I take Acyclovir from Walgreens (my drug plan) and the mfg is Carlsbad. I wish I found this web site before all my symptoms escalated, but without the continuing vertigo, I didn't know I had Meniere's! I really think the Acyclovir is the key to my remission, and maybe the JOH and B5/B6 are helping, too. Certainly can't hurt. You are in a good place now, being proactive, and I hope you will stop the progression before the vertigo becomes a frequent and reoccurring pattern. Why the docs haven't wised up to all the research and don't prescribe the antivirals until we ask for them is a mystery to me. Hope it works for you, too.
     
  16. Wayne

    Wayne New Member

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    I quit taking Meclizine a long time ago. The low dosage valium is the only thing that helps me, plus the Zofran under the tongue. I have noticed that stress can help induce an attack. I have had two surgeries and it helped with the attacks that I used to have where I would throw up for hours at a time (every 15 to thirty minutes). Now I just have the attacks where the dizziness is so bad I fall down. I have had to quit jogging and riding my horse because of this. It's a little scary driving so I don't make long trips and stay on side roads. I am going to a group at the University of Colorado who are studying Meniere's. Hopefully they can help me.
     
  17. DianeD

    DianeD Member

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    Wayne, it's interesting that you will be part of a group study. Please post what you learn.

    I am going to ask my GP for the Valium or Ativan since the ENT doc didn't want to prescribe it. My attacks are the same hours of misery. I still drive with a barf bucket in my car and bags in my purse, although thankfully, I've always been at home when they hit. I'm retired so I can usually stay close to home if I'm feeling "off". I can't imagine being out in the world with an episode.

    You mentioned surgeries...on your ear? What kind of surgery?
     
  18. teesdale

    teesdale Member

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    Diane, so glad to hear you are doing better. I am not sure about 7 weeks being too soon for rejoicing or not. I do believe that many cases, mine included, are driven by a virus. There are some very smart people on this forum who understand how viruses work and how elusive they are and can become so rejoicing may never be in the cards.

    I would caution against two things. One is complacency. When you have periods of relief lasting over a year it is possible to lose vigilance and the next thing you know you're back to feeling miserable. And in my case that misery can last for months before getting back to good health. It seems silly in a day and age where phones can remind us to do everything short of going to the bathroom, but it is possible to lose track of taking the preventatative supplements/drugs.

    The second thing is what JOH said about having a multi-prong approach. Something working today may not always work.

    I had a miserable summer and fall this past year and did not seem to be getting better even when being vigilant to the JOH/Valacylovir approach I have been on for years. So a few months ago I shifted to a Complex Vitamin B, a Monolaurin and Vitamin C mix, along with L-Lysine (also staying with many of the other JOH items) and I am currently enjoying 7 weeks of symptom-free living as well. And I appreciate every minute of symptom-free living!

    So, I don't want to burst your bubble, but I'm afraid this beast is always going to be lurking right around the corner. Vigilante Semper!
     
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  19. recoveringoptimist

    recoveringoptimist Member

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    Teesdale, what dose of Monolaurin do you take daily?
     
  20. teesdale

    teesdale Member

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    990mg in the morning and 990mg in the evening.
     

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