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Vestibular migraine with aura lasting months

  • By maintmandy

    I had my first episode last spring and my second one in the fall. They each lasted two and a half weeks. I don’t get the headache, thank god. Its fatigue, blurred vision like the world is moving, vertigo, nausea, numbness in my hands and face, light sensitivity and I get really startled by loud noises. Sometimes my balance is really off and I stumble around like I am drunk. I get really motion sick when I walk, especially out side, so I am constantly dry heaving. I cannot work at all when I have an episode. I am a 36 year old female landscaper and before this was active and healthy.

    This year it came back again in spring, so I assume its weather related. That one lasted two and a half months with out any relief. I didn’t do anything different from the first two times. I have seen 8 doctors. They looked at my eyes, ears, did an MRI on my brain and all is normal. They came to the conclusion that I have vestibular migraine with aura. I got better for about six weeks but by that time it was time for the fall one to strike, and it did. Here I am again. It hit me Sep 19 and I am still sick today. Its even worse this time around. Now I am getting more nausea every time I eat anything, and trigger foods are giving me morning headaches. They never did before.

    Here are my questions, do they usually get worse with every episode?
    How long can they possibly last?
    I have been on topiramate and it has not helped. Has any one gone from that to an anti-depressant and found it more effective?
    I have cut out msg, dairy, eggs, beans, gluten, chocolate, bananas, all pickled foods, peanuts. Is there something else I need to quit? I am still drinking a little coffee.
    Anything you can think of that may help get rid of this would be great. Thanks

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  • By Nancy Harris Bonk Moderator

    Hi maintmandy,

    Thank you for sharing your story with us and being part of the Migraine.com discussion forum – we’re glad you’re here!

    I’m sorry to hear you are having a rough time right now, that’s very frustrating. It sounds like you are working hard to identify your migraine triggers. Migraine triggers can include, but are not limited to certain foods, dehydration, skipping meals, changes in the barometric pressure, fluctuating hormones, an irregular sleep schedule and many others. If you’ve not kept a detailed migraine diary for three months, I would encourage you to do so. You can read more about that here; https://migraine.com/blog/migraine-management-essential-trigger-management/.

    Topiramate works wonders for some of us, others not so much. It’s not the only migraine medication out there, but the one that is most frequently prescribed. Try not to lose hope, there are over 100 medications and supplements that can be used to treat migraine which you can read about here; https://migraine.com/blog/migraine-preventives-start/.

    I know you’ve seen plenty of doctors, and probably don’t want to see yet another, but hear me out, OK? Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache experts are just that, experts in one area, migraine and headache disorders. These expert doctors are board certified in headache medicine (which is different than being certified in neurology) and treat one condition all day, every day – migraine and headache. We have more information on what makes these doctor special and how to find one in these articles; https://migraine.com/blog/really-find-headache-specialist/ and http://migraine.com/blog/how-are-migraine-specialists-different/.

    I’ll stop now so I won’t completely overwhelm you. I hope you find it helpful, let me know.
    Nancy

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    • By jwonghin

      @maintmandy,

      My migraine is very similar to yours. I got my first episode in April 2017 when returning from a 3 week vacation from Europe, that lasted about 3 months. Then I got my second episode in September 2017 that lasted for about 4 months. I don’t get the pain thank God, but I get nausea, neck pain, and dizziness that gets aggravated with motion and fatigue from bearing the symptoms. I feel like I’m intoxicated when I get it or very hungover. Whenever it starts, I’ll get nausea for a whole week before the other symptoms kick in.

      I’ve tried Zomig which hasn’t really helped. But what did notice does help is taking vitamins on a daily basis (Riboflavin, Magnesium, CoQ10). I recently started another episode this month (May 2018) which is about the same time as last year’s (in April 2017). I haven’t been taking my vitamins for the past two months prior to this, so perhaps that is related or perhaps it’s the change in weather.

      If anyone has any suggestions, please do let me know. This has affected my productivity in all areas 🙁

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  • By Jojiieme

    FWIW, we had to play around with my level of topamax, over 18 months, before my first settled dose worked properly. I still got some break-throughs, but not as radically as before the settled dose.
    Over the last 12 or so years, we’ve added to the mix, since abortives stopped working. (Migraine brains will often learn to overcome our medication regimes: we’re good adapters) I was on a short-term anti-depressant for muscle pain, and at another time, a different one to help me sleep. Neither was really great, neither really helped the migraines.
    What helped me (might not help everyone) was understanding my kind of pain – I’m more full-body than in the head, also more other symptoms than traditional pain – and the Failsafe/Friendly Foods selection of foods. It sounds tough, but I’m managing really easily. I’m still on topamax, and a couple of other meds used for other things but in me used for migraine prevention by controlling electrical flow between cells.
    For me, learning about the foods I can’t eat helped me learn about the chemical ingredients in the medicines that I can’t take. :))

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    • By Nancy Harris Bonk Moderator

      Hi JOJ,

      Thank you for getting back to me with more details. Any reduction in our migraine attacks is a good thing – I’m glad you’ve found a combination of things that help.

      I think I may be seeing an improvement with the combination of Botox and Cefaly. Of course now I probably jinxed myself!

      Happy Holidays,
      Nancy

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  • By faeriefate

    I don’t have that type of migraine, but I personally do experience my migraines getting worse. I have them in cycles (a few years at a time with a few years break). When it started this time around I had them once a month. Now I have them every day.

    No advice, just wanted to let you know that they do get worse and it’s not uncommon for doctors to just throw up their hands and give up on you. It sucks, it’s shit, and I can’t function is migraines either (I was losing weight from the nausea until I got some zofran).

    Migraines suck. I recommend a headache specialist, but that’s all I can say.

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  • By Nancy Harris Bonk Moderator

    Hi faeriefate,

    I’m sorry you’re having a rough time. You’re right – migraines do suck! I agree with you about seeing a migraine/headache disorder specialist, but one who is board certified in headache medicien, which is different than being certified in neurology.

    Take care and happy holidays,

    Nancy

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  • By Jojiieme

    Oh Nancy! I’ll keep fingers crossed for you!
    I personally don’t get the Botox approach – I’m partially paralysed in my major facial muscles and nerves, remember, so any effect it would have I supposedly already have. My support team and I giggle whenever anyone new tries to suggest it for me… But I do know others it’s helped for a while.
    I’m getting better at picking the early warning signs, and I’m alarmed at how early in our summer the frequency picked up this year; I’m rarely ‘normal’ health at present. Concentration and focus are becoming a difficult balance: not sure how much is normal ageing/menopause, and how much is migraine disturbance, and what could be some of the ABI effect (some memory loss) thrown in.
    Are there studies on the progression of these, as any kind of mix? (FWIW, my menopause is late, too, I’m 60)

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  • By jessiaqx

    Iv gotten diagnosed with vestibular migranes a couple of weeks ago now, Iv been having very bad symptoms for 4 months on the trot now, with no relief. Iv went to a specialist and Iv been allocated special exercises to do and I have found that they have been helping. Everything wasn’t kind of manageable until on Christmas Eve, we travelled to a different county to my nans house for Christmas and all of a sudden my hearing started to get even more bightend than usual and every thing I was hearing it started to repeat and echo in my head. Even everything I was saying myself out load this was happening. Its the 30th of Dec now and has gone down a small bit since then but it’s still not completely gone. Does anyone know how this happend and how I can get any relief from it?? Please help

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  • By Nancy Harris Bonk Moderator

    Hi jessiaqx,

    Thank you for reaching out to us. I am sorry to hear things are so difficult right now.

    Recently I’ve been having issues with vertigo that is very unpleasant – I totally understand. When I went to physical therapy last week she did some maneuvers that helped a bit, but I think I need to go again for the other side.

    Let me share our information on vestibular migraine with you, I hope helps; https://migraine.com/?s=vestibular+migraine&submit=Go.

    Please let me know how you are doing,
    Nancy

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  • By jwonghin

    @maintmandy,

    My migraine is very similar to yours. I got my first episode in April 2017 when returning from a 3 week vacation from Europe, that lasted about 3 months. Then I got my second episode in September 2017 that lasted for about 4 months. I don’t get the pain thank God, but I get nausea, neck pain, and dizziness that gets aggravated with motion and fatigue from bearing the symptoms. I feel like I’m intoxicated when I get it or very hungover. Whenever it starts, I’ll get nausea for a whole week before the other symptoms kick in.

    I’ve tried Zomig which hasn’t really helped. But what did notice does help is taking vitamins on a daily basis (Riboflavin, Magnesium, CoQ10). I recently started another episode this month (May 2018) which is about the same time as last year’s (in April 2017). I haven’t been taking my vitamins for the past two months prior to this, so perhaps that is related or perhaps it’s the change in weather.

    If anyone has any suggestions, please do let me know. This has affected my productivity in all areas 🙁

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  • By rachd0wns

    Hi @maintmandy and @jwonghin

    I know some of the posts here are quite old but I’ve been diagnosed with vestibular migraine and, similar to both of you, my current attack has lasted 9 weeks (so far…) not the “up to 72 hours” which everyone seems to quote for migraines! So I thought I’d share my experience…

    My first attack was terrifying, as I went from being a very active thirty-something to being unable to walk or read properly in the space of a week. My symptoms are primarily vertigo and disorientation (made worse by movement) plus nausea, numbness and muscle pain in my face, arms and lower legs, difficulty walking, blurred vision and visual aura. I get the occasional mild headache! Its been very hard to identify triggers but I know that coffee is one.

    For me, a low dose of a drug called nortryptaline has worked wonders in suppressing the worst of the symptoms. It’s a tricyclic antidepressant so takes a while to build up in your system, but after about 3 and a half weeks my numbness, difficulty walking and muscle pain reduced drastically and at about 5 weeks I started to have some good and some bad days, rather than them all being bad! I also think taking a daily multivitamin has helped.

    Every doctor I’ve seen has emphasised that different drugs and approaches to managing any migraine work for different people and I know no two people will have the same experience. But if there are others out there, like me, looking for reassurance that other people get attacks lasting for weeks or months and it’s not the end of life as you know it: don’t worry. If you are given a drug that doesn’t work, do ask to keep trying different ones until you find the right one for you!

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