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Anybody ever have vestibule migraines or MAV???!! Any Treatment/medication that has helped? Plz help

Posted , 11 users are following.

edward76742
edward76742

Just saw ENT and he thinks it's vestibule migraines. Has been goin on non stop for over 5 months. Headaches everyday, dizzy, unbalanced, disoriented, foggy headed, all day every day. Can u plz respond if you relate? Thank you

0 likes, 20 replies

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  • edward76742
    edward76742

    Posted

    Followed after real bad sinus cold. First attacked almost dropped me to the floor. Hasn't been extreme since after first attack but been steady ever since. Always there and does get worse at times especially at work. Laying or sitting down I'm fine just when I get to moving
  • Soooze40
    Soooze40 edward76742

    Posted

    Hi Edward. I too havebeen diagnosed with vestibular migraine by ent specialist. Have had symptoms for almost 6 months. He prescribed nortriptyline 20mg taken at night, which I've been on now for 1 month.  This last week I have seen improvement, dizziness not nearly as bad, so fingers crossed it will continue to improve. At first side effects were awful, palpitations, waking in the night, vivid dreams etc, but I really wanted to give it a fair chance, so stuck with it. Side effects mostly gone now. Ent secretary told me on phone I hadn't been taking the drug long enough to see if it was going to work for me.  She said it needed at least 3 months. I still take serc 16mg 3 times a day as well, but believe that these are just a placebo.  What did your specialist prescribe?
  • carina62
    carina62 edward76742

    Posted

    I've been diagnosed with MRV (migraineous related vertigo) and take 30mg Nortryptyline daily.  I feel all those symptoms every day and it's really knocked my confidence.   
    • Soooze40
      Soooze40 carina62

      Posted

      How long have you been taking the nortriptyline for carina?
    • carina62
      carina62 Soooze40

      Posted

      since Nov 2015.  I was discharged in January but even though the dizziness is not as bad, i still get odd feelings, my head does not 'feel right'.   I'm waiting to hear from my optician about the results of my Optimap and Visual Fields test that i had done last Saturday.
  • Gilly_flower
    Gilly_flower edward76742

    Posted

    I have had these symptons for 6 month , it 24/7 , they thought it was bppv , but now there talking about vestibular migraine s , but would the sump tons be 24 / 7 , i got such a terrible head , foggy , of balance , like I got a brick on top of my head , sort of tight feeling , sometimes I feel like I'm walking on a sponge , lighting makes me of balance , it's a nightmare , 
  • anne05147
    anne05147 edward76742

    Posted

    Hi, yes all of the above and diagnosed with silent migraines and given nortriptyline which has made a positive 80% improvement but still have odd wonky days.
  • Pupsicle
    Pupsicle edward76742

    Posted

    I also have Vestibular migraine and nortriptyline worked for a short time, but topiramate worked even better (until I had to stop taking it due to being allergic to an ingredient in it, but even now, the vertigo is not as bad as it was prior to the med and that was several years ago - it is common for the med to do this).
    • anne05147
      anne05147 Pupsicle

      Posted

      Good to know you were able to come off the meds completely, hoping to do so myself.
    • anne05147
      anne05147 edward76742

      Posted

      Well it did for me, it was the difference between being able to continue working or leave cos' i was having to hang onto the walls most of the time, I couldn't walk any distances as was veering over to one side and my visual vertigo was as if i was was spaced out.  Quite a big difference for me.  I also had severe pain in my neck and right shoulder as i have a bulging neck disc which also may be part of the cause of my silent migraines.  This is almost unnoticeable now.  It took 2 years for me to get any real help though and a proper diagnosis.  Hope things work out good for you too.  Best wishes.
    • edward76742
      edward76742 anne05147

      Posted

      I'm gonna ask about that same medication after I get this VEMP test done. It's been pretty brutal. I'm a longshoreman which requires hanging off the side of huge shifts in the middle of the night. Banquet server which your never stopping moving, carrying huge trays of glassware.. The best one.. Pouring Red wine or Champagne for the bride will your crazy dizzy and lightheaded off balanced. Hopefully I can get on something fast
    • Pupsicle
      Pupsicle edward76742

      Posted

      It prevented the migraines quite well. Best six months I have had in the past twenty years. (Vertigo was not always a symptom for me, just began several years ago after an over-exposure to my trigger, and it is common for migraine symptoms to change over time. None of the symptoms I have now did I have fifteen years ago.)
    • Pupsicle
      Pupsicle anne05147

      Posted

      I had to stop taking meds because of a severe allergy to an inactive ingredient that is in most meds (as well as most makeup, many personal care products, some foods, etc.). I would otherwise have stayed on the topiramate. Migraine is a neurological disease for which there is no cure. The best thing to do is avoid your trigger(s), if possible, and take a preventive med. Obviously, some triggers like weather changes and light are impossible to avoid, but food triggers can typically be avoided.
    • anne05147
      anne05147 Pupsicle

      Posted

      Yes, agree.  I am cutting back on sugar, i also know chocolate is a trigger.  I am hoping to come off the meds but the consultant said to wait another 9 months for my brain to heal.  I don't like taking meds if i can avoid them also.  My problems all started following the menopause, so it's different for everyone.  I never had problems with sugar or chocolate before this, now i know if i have too much chocolate it will cause visual vertigo.  I believe it's not about avoiding things but finding your new tolerance level and not overdoing.  Knowing your triggers is a big part of that and also knowing the level at which you are ok. I know that i can have a small amount of chocolate over a period of time but not too much all at once.
    • anne05147
      anne05147 edward76742

      Posted

      must make your whole problem much worse.  Hope you can get some help real soon.  I don't think even feeling much better as i do i could do any of that as would end up in a complete spin.  I find it hard now to walk carrying something in both hands in front of me, like a tray, as i now need my arms by my side to balance myself. All best wishes.
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