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My story: It's back after 20 years remission

Discussion in 'Your Living Room' started by LessA2, May 12, 2015.

  1. May 12, 2015 #1
    LessA2

    LessA2 New Member

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    Dec 1, 2014
    Hello all, I've been lurking here from time to time. Here's my story.

    In 1989 or 1990, when I was in my mid 30s, I had symptoms of MM - lightheadedness and fluctuating hearing loss with the sensation of fullness. I was evaluated for various other dire things and eventually diagnosed with MM. However, the episodes always subsided, and eventually they stopped altogether, fortunately with no lasting hearing loss. I happily abandoned the low-salt diet and figured the whole thing was behind me.

    Fast-forward 20+ years, when I began having hearing-loss episodes again in one ear. Again these episodes resolved after several days. Then at the beginning of 2013 I had an episode of hearing loss and tinnitus (a constant roaring/whooshing sound) that never went away. I went back to the ENT doc and had another round of testing for tumors and such, and again the diagnosis is endolymphatic hydrops, and the prescription is low-salt diet and deal with it. Since then, the hearing loss has fluctuated and even come back up to nearly normal for brief periods, but seems to be permanent. My hearing tests show a definite loss that has gotten slightly worse in the 2 years but stayed fairly stable. I am extremely fortunate that I have not suffered from vertigo except for occasional mild episodes.

    I found out about JOH when searching for help online, and in March 2014 I started what I guess you could call "JOH lite" - 3g lysine, vinpocetine, and lemon bioflavonoids (also take vitamin D and magnesium). Right about that same time my hearing got much better for around 6 months, but took another dive in the fall and has stayed that way.

    Last winter I also tried valacyclovir, 3g a day for 6 weeks, but it had no effect whatsoever as far as I could tell. (For whatever it may be worth, in both 1989 and 2009 I had outbreaks of what the docs were convinced was HSV, though the cultures in both cases were negative.)

    At this point I feel I am out of remedies to try. I have continued taking the "JOH lite" supplements (though only 1g lysine), and following the low-salt diet but not terribly strictly (it doesn't seem to make very much difference - that is, my hearing doesn't seem to vary depending on whether I've been cheating or not). I worry that it will get worse, or spread to my good ear (I think I remember having it on both sides 20 years ago), or I will start having worse vertigo. I share everyone's frustration at having this mysterious condition that seems like it ought to have a simple fix, yet no one has really figured out.

    I appreciate all the information and experiences here, and thought I'd add my data points to the aggregate.
     
  2. May 12, 2015 #2
    centrallanding

    centrallanding New Member

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    Apr 2, 2015
    Wow, your history is very interesting. The two outbreaks of HSV seem to coincide with the symptoms. Did they check your blood for HSV1 And HSV2 antibodies? Doesn't matter where on your body the symptoms are, it could be either one.

    My husband was diagnosed with MM in January. His symptoms were unmissable. The fullness in his left ear would build, his hearing in that ear would deteriorate, and then he would have acute vertigo (rapid spinning counter clockwise (toward affected ear), inability to walk, vomiting) 12-24 hours later his hearing was back and the process started over again. 15 episodes in 7 weeks starting on 3/9/2015.

    We live in Maine and we got a referral to Dr. Steven Rauch at Massachusetts Eye and Ear. Dr. Rauch is a leading expert in Meniere's. So here is the straight dope from one of the top docs. However I will add that this is the mainstream medical view. I believe there are also others, but he shared with us good information.
    - You must have fluctuating hearing, aural fullness, and balance to have the MM diagnosis
    - if you have MM you must keep a regular schedule, avoid stress, and make sure your health in every other way is the best it can be.
    - 2/3's of MM patients get better on a low salt diet. It isn't the low salt part that is most important though, you need to have your sodium intake be as consistent as possible throughout the day. No being good all day and then eating a pepperoni pizza.
    - Of the 1/3 that don't get better on a consistent sodium diet, 1/3 of the 1/3 will respond to a diuretic. You need to give the diuretic at least two months to see if it works.
    - that leaves about 11%. Dr Rauch calls them 'an elite group of trouble makers'. For these patients, if the symptoms are severe like my husband's he recommends an intra tympanic injection of Gentamicin. There is a recent thread that describes this very well.

    You haven't made it to the elite group yet and your symptoms are not severe. I would advise you to get to one of the leading Meniere's Centers (House in California, Mass eye and ear, and others) and get a definitive diagnosis. There are new test they will do. I would do the diet and diuretics. I would get to the bottom of the HSV situation. I would see an upper cervical chiropractor. I would read the book The Disease Delusion. I would check out Santa's thread 'The Beginning of the End'. I would be tested for Candida. I would check out the Success Stories in the Old Database. And last but not least, know that you are not alone. There is a lot of support here and lots of opinions. Take it in and digest it. Good Luck!
    Cheryl
     
  3. May 12, 2015 #3
    Vicki

    Vicki Guest

    since you have tried treatments that address HSV and have no relief and since your bouts of dizziness or vertigo are mild I know sometimes I sound like a broken record BUT

    http://menieres.org/talk/index.php?topic=32.0
    check out MAV (headache NOT required)
     
  4. May 13, 2015 #4
    centrallanding

    centrallanding New Member

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    Apr 2, 2015
    Yes! Vicki is absolutely right, could be MAV (Migraine Associated Vertigo). Check out the thread and also the book Heal Your Headache by David Buchholz. My husband's ENT thought he might have MAV when he tested negative on the Meniere's tests (involves putting cold and warm water in your ear?), he called it 'Migraine without the headache'. Turns out he was in remission when he had the Meniere's tests. His hearing test was normal then too (late last fall). Do you have low frequency hearing loss?
    Cheryl
     

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