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. Aladdin-Fae

    Aladdin-Fae New Member

    yes, I forget this. Also my blood sugar tends to get real low as well. I think I am going to stay at 160mg for now as long as it is working. Thank you for reminding me of blood pressure. I see my oto this month. :)
  2. Aladdin-Fae

    Aladdin-Fae New Member

    Migraines staved off...I do have a nasty ear infection again. :( But not having to deal with the pain. I cannot say they are totally staved off as I have had several silent ones but thank goodness not the pain.....
  3. So Cal Cyclist

    So Cal Cyclist View Askew

    If you wake up with a headache frequently please consider your sleeping position. Why? Because if your airway becomes blocked due to pillows, coverings, or your position on the bed you could be inadvertently breathing in CO2 from your recently expelled breaths instead of cleaner air within your bedroom.

    It is quite common for people to hide their heads by burrowing under blankets and/or pillows for some or all parts of the sleep cycle due to being cold, or because you have become accustomed to sleeping in this face down or covered position. When you sleep in this position the free flow and exchange of CO2 for oxygen is hampered. You end up breathing air your body has already taken the oxygen out of. The result? You toss and turn from your airway becoming so impinged that you wake up several times each night to change position. In the morning you have a headache, usually felt as pressure on the sides, back, front of your head, or a combination of all three.

    Your brain uses 30% of the oxygen your body takes in with every breath in order to function correctly. Block that free exchange of air and your brain is going to suffer. Get yourself a good pillow that allows you to sleep on your back comfortably, have a daily regimen of going to sleep and waking up at the same time, and keep your room at a constant comfortable temperature for sleep and it should alleviate this problem.
  4. Aladdin-Fae

    Aladdin-Fae New Member

    wow - great post

    So Cal - what type of pillow do you suggest? I have an older temper - pedic (so) one but need a new one. The kinks in my head and neck I know give me a bad 'headache' not migraine but it still is bothersome.
  5. So Cal Cyclist

    So Cal Cyclist View Askew

    I am going out today to purchase a memory foam type from my chiropractor. Everyone is different in their pillow needs. I would suggest asking a chiropractor, your doctor or check out the websites of the various pillow manufacturers. Usually the large box stores will let you try out pillows and return them if they are not comfortable.
  6. Aladdin-Fae

    Aladdin-Fae New Member

    ok - thanks!
  7. Imnoscientist

    Imnoscientist New Member

    I'm going to quote myself from a thread in the Living Room as it is relevant to this thread - MAV misdiagnosed as MM.

  8. burd

    burd New Member

    Thanks INS. I love hearing success stories like this. Too, I have wondered over the years of my MAV awareness just how many others are suffering needlessly through a meniere's misdiagnosis and treatments inappropriate for what they really have and would have a better life if they knew it what it really was that they had.
  9. Imnoscientist

    Imnoscientist New Member

    Just giving this a bump as my recent migraine episodes sound A LOT like MM, but I re-did all the tests (caloric, EEG, audiology etc) and it's still migraine:

    Hearing loss (albeit high frequency)
    Aural fullness along with muffled hearing and some pain
    rotational vertigo

    I've also met another guy who had the same symptoms, but significantly worse (is now totally deaf in one ear). He's been seen by a team of experts (some of the same ones as me) who have concluded it is NOT Meniere's. I believe one of the main reasons is the speed and aggression with which the hearing loss occurred (just a few months). He has also been diagnosed with vestibular migraine (like me).
  10. studio_34

    studio_34 Guest

    There's an article over at mvertigo that people here should print off and take to their doctor if they suspect they have MAV and not MM. Or if you're just not sure what you have, the article should help you and your doc to work it out. Good differential diagnosis diagram there too!




  11. Gina05

    Gina05 Guest

    I don't have a headache, but this picture is just how I feel when stressed and sad. Thanx, for the wake up call,
    Think happy thoughts, avoid stress triggering an episode! :)
  12. Aladdin-Fae

    Aladdin-Fae New Member

    have you had a high resolution cat scan with specific cuts to look for SCDS? Not a regular CT scan but a specific one designed to look for dehiscence in semi-circular canal.
  13. Aladdin-Fae

    Aladdin-Fae New Member

    MAV was my first actual diagnosis with a left ear vestibular disorder - possibly MM given to me. ( I underwent numerous tests - even saw a psychiatrist.)
    Had MRI but ent said it looked clear.

    Yes, I had migraines. Did not know what MM was. Did research on MM. Had something like MM but something else. Went to another DR. who had no idea what was going on.

    Finally ended up at WASH U -Barnes Jewish, STL. Tested for almost a full day. Showed my new OTO my MRI and he actually saw the dehiscence in the right ear canal (not usually visible via mri). He then scheduled me for a CT Scan.

    Propable MM in left ear but would have to be watched and observed for a set amount of time to give final diagnosis.
    Bi-lateral SCDS

    sometimes the diagnosis is conflicting. Headaches/migraines, both low and high frequency hearing loss, ear fullness with pain, quick rotational vertigo were some of my symptoms with SCDS. However, I had really bizarre ones as well - such as hearing internal body noises to the point of distraction. Hyperacus and tullios were also common. I had blaring tinnitus though.

    What I am trying to say - is that MAV would have been my original diagnosis with MM possible left ear. I researched on my own and followed my heart and gut.

    now conclusion:
    bi-lateral SCDS (right plugged, left ear pending surgery)
    Bi-lateral MM (left ear worse than right)
    MAV - controlled with diet and medication
  14. Imnoscientist

    Imnoscientist New Member

    Hi Aladdin, I had a CT scan almost 10 years ago (but that's when I had optic neuritis so they were looking at the orbits rather than the ears) and two MRIs. No ECOG.

    My neurologist is obviously satisfied that it's migraine alone (and statistically, the chances are he's right). Nonetheless I am seeking a second opinion and will see the other guy in February.
  15. Aladdin-Fae

    Aladdin-Fae New Member

    yes statistically it is very very rare - best wishes :)
  16. June-

    June- New Member

    But we are all 1%ers.

    It seems sometimes that even doctors forget that if 1% of their patients have a disorder that means they will probably see one a week whether they know it or not. If they don't do the diagnostics, they will erroneously assume that a disorder is rarer than they imagine because they never 'see' it.

    Lab tests recently revealed I have mono. At my age, the chances of that are nil. But I still have it
    Actually it is not all that rare, it is just rarely diagnosed because it doesn't fit the statistical profile.

    My motto is insist on the diagnostics and if it turns out negative let the doctor enjoy his I told you so moment.
  17. Imnoscientist

    Imnoscientist New Member

    I hear you. I will be discussing diagnostics with my second opinion neuro. I'm in the process of collating my existing test results to take to the appointment.
  18. Aladdin-Fae

    Aladdin-Fae New Member

    best wishes im-science

    good post june
  19. Gina05

    Gina05 Guest

  20. Dr Burcon

    Dr Burcon New Member

    Migraine sufferers are twice as likely to be diagnosed with Meniere's than the general population, and Meniere's patients are twice as likely to get migraines. Same holds true with Bell's palsy, Trigeminal neuralgia and other one sided neurological problems. I have followed three hundred patients diagnosed with MD by ENTs over the the past four to twelve years. What they all have in common are old whiplash injuries, an average of fifteen years before the onset of symptoms.
    Next National Meniere's Seminar for patients and doctors will be in Grand Rapids, MI on Saturday, June 23, 2012. More info at MenieresResearch.com

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