Kae92

192d

Do you have severe chronic migraines and vertigo with your EDS? Does anything help them?

Migraine

Ehlers-Danlos Syndrome (EDS)

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  • Vivi207

    192d

    The migraines have decreased since I’ve eliminated gluten (I know that sounds so cliche). I went from 5/6 a week to 5 total since 2018. Vertigo comes and goes and I just try to be as still as I can to mitigate the spinning of the room

    • Kae92

      192d

      I have a gluten intolerance so that's already eliminated. My doctors have all hit walls and now we're trying magnesium infusions, but they don't seem to be helping much. Thanks though :)

      • Vivi207

        192d

        sigh. I’m so sorry. Mine seem to be more MCAS related it seems

    • Heaven197987

      192d

      same but I would also add having vitamin b12 checked and other vitamin levels

      • Vivi207

        192d

        I see my DO monthly and she’s all about lab work, so I get stabbed often and levels monitored

      • Heaven197987

        192d

        I also recommend having a full thyriod panel done

  • Hanner98

    192d

    Yes I get chronic migraines. I went through every medication, shots, etc and nothing worked until I started getting Botox. I still get them but not nearly as bad as before!

  • Gingerbunny26

    192d

    I actually went to PT for my migraines. They poked prodded and pinched a bunch of muscles in and around my neck. I didn't have a true migraine again for close to 10 years. 🤷🏻‍♀️ maybe if you find the right PT who can actually do it right (which is really the hard part) they might help? Good luck hon, I know it's absolutely miserable

  • MJ_PDX

    190d

    Yes, I am in the same boat. I see a PT frequently, acupuncturist weekly, I am considering Botox, and starting saline iv to help with blood flow. Nothing seems to make it worse or dramatically better yet 😥 💕

    • Kae92

      190d

      I just started botox. Hopefully it helps

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