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Vestibular migraine with aura lasting months

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

  1. 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

    1. @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 201😎 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 🙁

    2. I take the vitamins and then I do intensive acupuncture and keto diet. Both have saved my life.

      I stopped and only 1 year later I’m in my second week of roaring tinnitus, severe vertigo, mind blowing migraine, a knife in my eye, nausea, cognition issues, and of course I spin in my sleep so I’m up barfing most nights. I have been to acupuncture 5 times in six days, on day 4 of keto and taking vitamins and I’m 40-50 percent better.

  2. 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. 😀)

    1. 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

  3. 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.

    1. 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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