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Well this is a fun club to join

Discussion in 'Your Living Room' started by recoveringoptimist, Aug 10, 2019.

  1. recoveringoptimist

    recoveringoptimist New Member

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    New to Meniere's, new to this forum. You'll have to excuse the sarcasm...just part of me grappling this new development.

    Thought I'd share my story and see if anyone can relate or offer helpful advice for dealing with this condition.

    I'm 36 years old. Two years ago I was diagnosed with endolymphatic hydrops after experiencing month of aural fullness in one ear and eventually, some tinnitus in both ears, but strangely more in the opposite ear. I adapted and had been managing that pretty well until one day a month ago things decided to shift again. I came down with some sort of 24-hour virus that put me in bed with the chills and a 102.5-degree fever, which was soon followed with my first experience with vertigo.

    The next day I felt better, but dizziness lingered. Then it lingered for a few more days and into the next week. At that point I had a bad feeling it was Meniere's and a visit to the ENT, followed by some testing, confirmed this.

    All I was given to deal with this newfound dizziness was a prescription for Meclizine and direction to continue taking my diuretic. The Meclizine did nothing for me. So, weeks later I was still experiencing lingering dizziness at times, but thankfully, no more vertigo episodes.

    Things haven't gotten as bad as many of the experiences I've read about so far. But I have fear and anxiety of it happening. With that, I'm trying to get in front of this condition with ways of treating and managing it before it gets the best of me.

    I've been pretty vigilant about sodium intake. I've avoided caffeine and alcohol — an immensely, immensely hard thing for a craft beer nerd to do. And I'm starting acupuncture on Monday.

    I'm curious about your experiences. What have you found to be effective for you? Acupuncture and traditional Chinese medicine helped? Homeopathy? Hypnotherapy? I've read about these avenues but nothing is as convincing as hearing about them from people experiencing the condition.

    I'm glad this site exists.
     
  2. Jimii

    Jimii Member

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    Make sure that fever wasn't caused by Lyme Disease if you are in an area that has the deer ticks.
    Also, don't give up on the craft beer, I haven't.
    Meclizine is highly effective for me. I don't go anywhere without it. I only take it as needed, not every day.
    Caffeine disappeared three years ago for me (cardiac issue). I still miss it.
    How is your hearing?

    Welcome to the club.

    Jim
     
  3. AnneT

    AnneT Active Member

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    Welcome to the club that no one wants to join! This is a great place to get and stay informed, have a cry and a laugh.

    I think your experience, the onset, is a little unusual. With it seeming to be triggered by an infection, I’d think a great place to start would be antivirals. Plus or minus any related supplements.

    Take courage - you may be in the large majority of Menieres that resolves on its own, spontaneously (some studies say 80% within 9-12 months, I think).

    Read lots here and see what resonates for you. I’m glad I tried all the medicine and supplements, but wish I hadn’t resisted the procedures and surgical options for so long.

    I wish you fortitude and healing!!
     
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  4. Mac

    Mac Active Member

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    get on anti-virals asap.

    If your MM is caused by a virus this will save the quality of your next 50 years of life.

    You have nothing to lose. do some research on the threads.

    best of luck.
    mac
     
  5. Gardengal

    Gardengal Member

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    Agree with Mac. Try antivirals for a few months.
     
  6. California Sun

    California Sun Active Member

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    Welcome to the club no one wants to join, and good luck in your journey. I have no recommendations but I will say that Meclizine didn't work for me either. I found plain, OTC original formula Dramamine to be much more helpful but it does make one sleepy.
     
  7. recoveringoptimist

    recoveringoptimist New Member

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    Thanks, Jim.

    The alcohol isn't a trigger for you? How often do you drink beer?

    During the two years I was just diagnosed with endolymphatic hydrops, anything more than one beer would start to change the pressure in my ear and bring on fullness. But then I found that if I drank a serving of water with electrolyte drops from a brand called LyteLine, I would basically be fine to drink beer for hours (think a sports beverage like Gatorade but with organic ingredients, minerals, and little sodium). But I haven't dared drink a beer since the one vertigo episode I had that got me diagnosed with Meziere's.
     
  8. recoveringoptimist

    recoveringoptimist New Member

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    Thanks, Mac. I actually spent some time just reading this forum before bed last night and came across a couple of threads about antivirals.

    I found it very interesting and it's something I want to try. I just hope my ENT will be open to prescribing them. If not, perhaps I'll have to just go to my family doctor with it.


    Thank you to all of you for the kind welcome. I'm hoping I'll find some answers from others in this forum. At the very least, it's nice to know I'll have an outlet for relating to people who share the experience of this condition.
     
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  9. Dario

    Dario Member

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    Hi, have you tried obtaining Serc (Betahistine) or Stemetil?
     
    • Like Like x 1
  10. recoveringoptimist

    recoveringoptimist New Member

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    Hi Dario. I haven't, but I'm seen mention of Serc. How would one obtain that in America?
     
  11. Dario

    Dario Member

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    I am not 100% sure but apparently you can get it through a pharmacy that does compounding from what I have read on here. You will need a prescription from your doctor I think. I am in Australia so it's all different here. Serc is readily prescribed to people with Meniere's and it has worked a treat on me. My friend used to have drop attacks with violent spinning and vomiting about 4 years ago. She was diagnosed with Meniere's and has been on the Serc since. Although she can sometimes feel a little unstable she hasn't had any attacks for a couple of years now.
     
  12. Tony Wilson

    Tony Wilson New Member

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    Get a script from your ENT and look to our neighbors up north (Canada) to fill. Much cheaper than a compounding pharmacy and easy to do business with.
     
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  13. Jimii

    Jimii Member

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    I have a few (sometimes more) really good beers every week. 2-3 in a day is my limit as these are usually high alcohol beers.

    Also how is your hearing? If your hearing is OK I am surprised you were diagnosed with Meniere's.

    Jim
     
    • Agree Agree x 1
  14. June-

    June- Well-Known Member

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    Try antivirals such as acyclovir, valtrex or famvir. Is you take acyclovir, spread it out across the whole day as much as possible.

    Eliminate all caffeine.

    Be alert to any possible allergies that are triggers.
     
    • Agree Agree x 1
  15. JonBubo

    JonBubo Member

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    You dont need a script for antivirals. Instead of waiting to find that sometimes elusive Dr. that will prescribe them you can start today on an effective mix. A base of 3 grams of lysine, 2 - 3 grams of C and ONE of (olive leaf, oregano oil gel caps or monolaurin) will be as or more effective than the pharmas. I actually got much better doing this than when I was on acyclovir alone. This would mean you can be on the path to getting relief as fast as they can ship to you.
     
  16. recoveringoptimist

    recoveringoptimist New Member

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    And alcohol doesn’t trigger any fullness or dizziness for you?

    Caffeine will be easy to avoid. I just want to be able to enjoy a good beer now and then.

    I had some hearing loss going back to my hydrops diagnosis but it’s not drastic.
     
  17. Dario

    Dario Member

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    Without making you think that we are all the same and this condition doesn't affect us all differently - I drink quite a bit. Sometimes I only have 2 or 3 alcohol free days per week. I drink lots of wine and whisky and it is not a trigger for me at all.
     
  18. Jimii

    Jimii Member

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    Same here, all the beer I want. It is my stomach that stops me, not anything else.
    Too many calories.
    In fact my Dr. wanted me on Ativan. I said no way, no how. He told me it had similar affects to alcohol.
    I said great!

    Jim
     
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  19. Clare

    Clare Active Member

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    The thing about Meniere's is that it will rob you of your quality of life if you let it. Try to live as fully as you can, and cut back when you find a cause-effect relationship to something. Don't fear doing what you want unless you conclude it can actually trigger vertigo *for you*. We're all different, and the disease is pretty random. Live your life!
     
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  20. Dario

    Dario Member

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    I cannot agree with you more Clare. Well said.
     
    • Agree Agree x 1

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