Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's

Discussion in 'Meniere's Disease "Database"' started by studio34, Oct 17, 2010.

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  1. studio34

    studio34 Guest

    Hi Vicki -- yeah, you're going to have to stop eating those foods for a while -- maybe permanently. I think you'll see a really big difference quite quickly and then as Burd says, you can try reintroducing a few things (as long as you're out of the woods) and see how you go. I'd leave caffeine out until last. It may only be that which keeps you feeling ill. It's a potent "painkiller" as Silver says and should be completely avoided in chronic cases just like the painkiller meds. Coffee caused me horrendous neck pain the day after.

    You can also check out mvertigo.org if you want to read more stories from people with MAV. The site is dedicated to MAV.

    Birdmom -- glad our article and the "Migraine Brain" book has helped clue you in on a possible migraine problem. All you can do is give it a go with those 3 steps and things should improve a lot. Bernstein also mentions that stress reduction is a priority for a migraineur.

    Here's a very good powerpoint presentation that Nicholas Silver presented. In it there are some case studies that you guys might identify with. I was knocked over by the one about the 21 yo girl with exercise intolerance. It could be me. And now this girl is normal after thinking she had fibro for years on only 25 mg of Prothiaden and a lifestyle change. Prothiaden is my next trial.

    What a photo!

    [​IMG]

    http://www.mvertigo.org/ppt/Silver_chronic_migraine_2008.pdf (right-click and "save as" ... it's a 30 MB file)

    S
     
  2. CarolineJ.

    CarolineJ. New Member

    Birdmom, check out this link about visual issues and floaters with Migraine.

    http://www.articlesbase.com/non-fiction-articles/what-you-should-know-about-optical-migraine-98761.html
     
  3. Taximom5

    Taximom5 New Member

    Prothiaden has a long list of side effects including dizziness and peripheral neuropathy:http://www.asia.cmpmedica.com/cmpmedica_my/disppdf.cfm?fname=CMI0681.pdf

    It also clearly states that one should not use it if one has thyroid disease--which, like celiac disease, is strongly linked with both migraine and fibromyalgia. In fact, thyroid disease is strongly linked with celiac disease.
     
  4. Imnoscientist

    Imnoscientist New Member

    Hi Taximom,

    Thanks for posting that information. As always it's very important to be aware of side effects and interactions with other medications and/or conditions.

    I haven't heard before about a link between thyroid and migraine - that's very interesting. I have migraine and have a close friend with thyroid disease (with goitre!) but no migraine. I will explore further.

    I checked out that link you posted - it's good. Very easy to understand (layman's terms). I misread a bit of it - I thought it said that if you experienced change in sexual desire as a side effect you should present immediately to the casualty department! LOL. I did notice that it said if you have a thyroid condition you should discuss this and any other medications with the doctor but couldn't see where it says that one shouldn't use it if one has thyroid disease. Did I misread that bit too I wonder?
     
  5. Taximom5

    Taximom5 New Member

    It's under the section about taking other medicines: thyroid medicine may be affected by Prothiaden or may affect how it works. Thyroid medication can be extremely difficult to regulate in patients with other issues; I know my endocrinologist is very careful to tell me even to wait 5 hours before taking any vitamins or supplements, as they can interfere with thyroid absorption, too. She also has her thyroid patients avoid all decongestants (not just wait 5 hours, but avoid them altogether).
     
  6. VickiS

    VickiS New Member

    Interesting re the Prothiaden...I have been on it for many years for anxiety (75mg at night which is considered a half dose), I started BEFORE my dizziness kicked in. I often wondered if it might be the cause but I asked my oto guy and he said to stay on it as he often prescribes it for MAV.

    I would actually like to come off it but can advise to NEVER stop suddenly! I did once and fell in a big heap, so you need to taper the dosage down very, very slowly.

    I am also on Epilim, it helps dampen down the vestibular system and is also a mood stabiliser. I have no side effects from it, maybe a little weight gain at first but I work out to keep my weight down and I found this side effect wore off after a while anyway.

    I have tried Topomax, lasted but two days on that. My oto also prescribed Sibelium (calcium channel blocker) which I never tried after discovering my mother and maternal grandmother were both allergic to this class of drugs.

    I hope one day someone does a book, or ebook specifically about MAV/dizziness incorporating all the info here. Good job guys! :)
     
  7. vikinggal011

    vikinggal011 New Member

    Thank you for sharing that! :) I get auras and it's hard to explain to people who don't get them what I go through. It starts out as that little blur and it only gets worse from there.
     
  8. well now that i dont have menieres the next step is to determine if i have maV sure as heck with there was a test for it!!

    i am scared of all the drugs they give for iT. AREN'T THERE ANY WITHOUT HORRIBLE SIDE EFFECTS that aren't antidepressants?
     
  9. Taximom5

    Taximom5 New Member


    Well, there seem to be two distinct camps approaches.

    One approach, Studio's, is to claim that there is no cure for MAV, and that it can only be managed with lifestyle changes and medication, with very heavy emphasis on the medication.

    The other side, which is obviously where I reside, believes that, while there may be a time and place for medication, there is also ample evidence that for many (and maybe all), there are many separate and distinct causes of migraine, and therefore separate and distinct treatments, sometimes even cures.

    I also believe that many of the "experts" who claim that there is no cure for MAV and who recommend drugs for it are in some way financially tied to the makers of those drugs.
     
  10. Imnoscientist

    Imnoscientist New Member

    Dizzy in Alburquerque,

    Is it confirmed that you don't have MM? If so that's really great news.

    I agree, it would be wonderful if there were a definitive test for migraine but hang in there.

    The great thing about migraine treatment is that you can do a lot of it NOW and there'll be no side effects, if anything, better overall health. Read back to the first page of this thread where Scott talked about treatment strategies. The "front line" if you willl is lifestyle related - diet, sleep, exercise etc. So the worst that can happen if you do those is that you'll be a healthier person. As Scott points out, many people get great success from lifestyle changes and may require meds intermittently, or not at all.

    Of course, some people will needs meds as well. There are a whole range of classes of meds and different meds within each class. And yes, a lot of them are not anti depressants. For the majority of people the side effects are not horrible, and there may be no side effects at all. So don't panic.
     
  11. Imnoscientist

    Imnoscientist New Member

    Taximom,

    I disagree with your interpretation that there are "two distinct camps". I can see nothing in Scott and Burd's extensive posting on MAV that suggests that. Quite the opposite in fact. They clearly say that the first resort is lifestyle changes. They never suggest that meds are the best way or the only way. They talk about meds as being necessary for some people and as part of an integrated package of treatment.

    There IS no "cure" for migraine. The brain is what it is. But absolutely, it can be very successfully managed.

    To suggest that people who state that there is no cure for migraine are tied to the pharmaceutical industry is just nonsense. And a pointless diversion. You may as well say that "experts" who say migraine is "caused" by a gluten intolerance are somehow tied to the makers of gluten-free products industry.
     
  12. CarolineJ.

    CarolineJ. New Member

    Hi TM. I was going to post the same sentiment as INS but he beat me to it.

    I think it is unfair to characterize Scott's approach to MAV the way you did.

    As a person with MAV, Terry and Scott and many others here have supplied me with many insights into this disease and I have never once felt that medication is the first step.
     
  13. Taximom5

    Taximom5 New Member

    And just how does one "confirm" that one doesn't have MM?
     
  14. Taximom5

    Taximom5 New Member

    But that is not EXACTLY what I said. Please don't twist my words. And I have never in any way endorsed makers of gluten-free products. That's a whole different discussion, and one where we would probably agree, anyway.
     
  15. CarolineJ.

    CarolineJ. New Member

    That is a valid question and the same could be asked about any of us who have been diagnosed with MAV or MM.

    If my memory serves me correctly DIA (Chris) does not suffer from vertigo, hearing loss or tinnitus which are major players in a MM diagnosis so she should not have been diagnosed with that in the first place.

    Please correct me Chris if I got any of those wrong.
     
  16. Taximom5

    Taximom5 New Member

    Scott has his very own forum for that, which he has already marketed here. Hmmm, wonder how he funds it?
     
  17. Taximom5

    Taximom5 New Member

    Fair enough!
     
  18. Wino

    Wino Resident Honey Badger

    Not for nothing, but it doesn't cost a whole lot of money to run a message board. Especially when there isn't much bandwidth involved.
     
  19. Imnoscientist

    Imnoscientist New Member

    Ok. Here's what you wrote:
    And here's how I paraphrased (not twisted) it:
    Your next nod to a conspiracy was the following:
    Have you tried asking him how he funds it? And can you explain what you imagine he has to gain by "marketing" that forum here?
     
  20. Imnoscientist

    Imnoscientist New Member

    And now that we've all vented our collective spleen can we get this thread back on track? It's pretty clear cut what it's meant to be about:

    1) What is migraine?
    2) How can we manage it?

    Big breath in, exhale and on we go.
     

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