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Vestibular Migraine

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mindi32020
mindi32020

10 years ago my ENT diagnosed me with vestibular migraine. There is no pain, only 24 hours that begins with (what i call) violent vertigo, then continues with nausea and dizziness. Driving is impossible during vertigo and difficult with the rest. He put me on verapamil and my attacks went from every other day declining until eventually I weny into remission.

Yesterday I had the worst vertigo I can remember for probably the last 5 years. I'm so heartbroken, i can't describe it any other way. I'm dizzy and sick today and want to curl up and hide. I don't want it to be back. No one I know understands what i go through. My husband tries, but he just knows the words I use, not the feelings that come with it. My PCP has no experience with this and just renews my script because I tell her it helps.

Does anyone out there have Vestibular Migraines or MAV? The internet says only 1% of the population is diagnosed with this. Will I ever meet someone who understands?

0 likes, 11 replies

11 Replies

  • Anonymous111
    Anonymous111 mindi32020

    Posted

    So how long does each episode last?

    They begin with vertigo (room is spinning), which lasts for how long?

    Then feel dizzy (lightheaded) and sick for 24hrs afterwards?

    But no headache?

    What triggers them?

    • Anonymous111
      Anonymous111

      Posted

      Do you have something to take for when they happen - prochlorperazine for example?
  • anne_51242
    anne_51242 mindi32020

    Posted

    Hi, I have silent migraines ( no headache just aura and nausea) but have had mild vestibular auras in the past where everything spins round. I'm writing this because on Monday I had the worst vestibular attack ever, I'd stopped off for for lunch at a cafe, just got out the door having started to feel weird when the ground just tipped beneath me. Nearly fell over backwards, had to double over and grope for one of the tables outside and managed to get in a chair before I fell. Attack didn't last long, just a few minutes but very worrying. Felt nauseous afterwards but no other aura and no headache. Anne

    • mindi32020
      mindi32020 anne_51242

      Posted

      The ground tipping, I always tell my husband it's like the ground beneath me moving away. I had one in my sleep once, i was dreaming and it was like someone through water on a chalk drawing. The whole world washes away and then I woke up to a vortex in my brain.

    • anne_51242
      anne_51242 mindi32020

      Posted

      Yes an aura can get into your dreams as I know from my own experience, yours sound awful to cope with. In my own case I do have a lot of stress going on, in the space of 21 months I've lost both parents and found my partner has a form of chronic leukaemia so I'm guessing this is the reason. I'm also having treatment for possible tempora mandibular joint dysfunction where I've been clenching my teeth so much at night I get terrible pain in the jaw and now have a hairline crack in one tooth which must be making things worse. I've never had such a strong feeling of imbalance in my life before, it could have been an earthquake in how it felt but you don't get many earthquakes in Shipston and no one else was on the floor!

    • mindi32020
      mindi32020 anne_51242

      Posted

      I'm sorry to hear how much you've been through lately. It does sound like you've got a lot to deal with which can increase stress and increase symptoms.

      At the height of my symptoms before diagnosis, i had vertigo every other day with nausea and dizziness on the alternate days. I am so scared to go back there. It is no life.

  • mindi32020
    mindi32020

    Posted

    Vertigo can last anywhere from 10 seconds to 5 minutes. Last night was a long one. Dizziness, nausea and a feeling of instability last at least 24 hours, no more than 48 hours.

    The only trigger I ever found was stress. I don't feel particularly stressed right now, but I was promoted 2 months ago, i suppose the change in responsibility could be contributing.

    I didn't mention the tinnitus and auras I had this time. I didn't even correlate them until I realized i don't have any auras so far today. Both tinnitus and auras have been constant for a couple of weeks... a month maybe? To the point where I thought i was hallucinating (seeing things moving). I think I need to go back to my ENT, I'm just so depressed by it.

  • amber1966
    amber1966 mindi32020

    Posted

    mindi32020 i feel for you. I have been in the midst of the dizziness, aura, Tinnitus, aversion to noise and light and quick movement, brain fog, ground moving, motion sickness and constant feeling of nausea, neck pain (from cirvical sponylosis) etc for months - probably in fact more than three years on and off since that initial violent vertigo attack and although I occasionally get a debilitating migraine headache, it’s not often thankfully but the other symptoms are constant. I now know however that I suffered Migraine Aura as a child although as the time with no headache I didn’t realise that’s what it was.   I take beta blockers to try and prevent the migraine, Codeine for pain relief and prochleperazine for dizziness and nausea.  They all

    Help but don’t completely prevent or cure.  I can’t see an end to this for me as the slightest things sets of my symptoms, and It does restrict me as I am off sick from work and have to take care with everyday tasks - going out isn’t always fun due to crowds and lighting (ive saved a forTune in impulse shopping 😊wink and watching tv or surfing the net can be painful, but luckily I have a very supportive partner who mostly works from home

    And helps me a lot.  I don’t know when/if it will end.  I feel I have almost come to terms with the condition despite never having heard of it before my ENT diagnosed it. I hope for our sake there is a lot more research on vestibular migraine as although I don’t feel ‘ill’ as such, I do mostly feel alone with this unseen condition. 

  • Lgmer
    Lgmer mindi32020

    Posted

    I have MAV and understand! I recommend you look for triggers, certain foods like dairy or caffeine; computer games that flash or force your eyes to move around; even watching the TV while you fast forward through commercials. The triggers can bother you more at some times than at others. When I was first diagnosed coffee was a trigger. I was much better when I stopped it, then friends gave me a gift basket full of chocolate and two days later I was dizzy again. I finally figured out that the caffeine in coffee made me dizzy right away but the lower caffeine in chocolate has a 24-hour delay. Good luck. 
  • sandra138
    sandra138 mindi32020

    Posted

    I too suffer with vestibular migraines but can’t find anything that helps. My consultant put me on Amitryptaline but I don’t always have headaches with it. I didn’t take them just can’t take the constant vertigo 
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