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Trying to get to grips with migraine symptoms

I have experienced migraine with aura for 25 years, initially with headaches but on the whole just visual auras followed by a period of fatigue. Since the start of 2024, my symptoms have ramped up at an alarming rate, episodes of aura increased in frequency and were accompanied by more optical migraine episodes. Then in February I experienced a bad case of vertigo for the first time, before April I experienced more dizzy spells and feelings of light headedness and total unease. I was diagnosed with vestibular migraine and tried propranolol for a number of months with little to no improvement. I've also tried physiotherapy for my neck and I'm now off propranolol and trying acupuncture with VRT before looking at the next medication, topiramate.
I saw a second neurologist who diagnosed PPPD, as well as an ophthalmologist who ruled out any issues with eyesight.
Yet in these episodes the worst experience by far is the coldness in my extremities (esp feet) and the dizziness that seems to occur alongside this (when I can manage to return heat to my feet - this isn't a constant coldness, it comes in cycles pretty much daily). My legs will function, but will feel like jelly (it feels like vasoconstriction, where legs go almost ticklish or more sensitive than usual). I also have a stiff/sore lower back that comes and goes, which I've been working on to improve. (I had a similar flare up in 2019 but nowhere near as bad, when I also noticed a similar pain in lower back)
So between my cold feet, sore lower back and heightened aura/dizziness episodes, it's a constant battle. I've been trying all year to understand what these sensations are but they still feel overwhelming. Ultimately I just want to feel normal again, I can tolerate aura migraine, I have done for years, but this I can't just put up with. If you have any suggestions or advice, I'd be incredibly grateful.

  1. Hi
    Thank you for starting this conversation. I know how difficult it is to live with new and debilitating symptoms. I'm glad your eye sight is OK, but sorry to hear you've having so much trouble with balance, dizziness and cold extremities. I do hear how overwhelming this all is and I want you to know we're here for you.

    Do your feet and/or other extremities turn purple or white when they get cold? I'm wondering if Raynaud's is something you may want to discuss with your doctor. We do have information on Raynaud's from 2013 that has good information in it you can see here; https://migraine.com/blog/migraine-comorbidities-raynauds-phenomenonsyndrome.

    I would like to share with you Alicia Wolf, also known as The Dizzy Cook who lives with vestibular migraine. She has a wonderful website with loads of information (more than recipes) you can take a look here; https://thedizzycook.com/

    Another thought is it may be time to reach out to an expert doctor who is board certified in headache medicine. General neurologists may be fine doctors however it's difficult for them to be experts in one disease state as they treat so many including stroke, MS, epilepsy, Parkinson's and more. Migraine/headache experts have extra board certification in headache medicine (not all neurologists have this extra certification) and treat migraine and headache all day, every day. They can have a huge impact in our care. I can tell you first hand these experts have made a positive difference in my quality of life. Let me share some of our resources on this topic:
    https://migraine.com/living-migraine/evaluating-doctor-patient-relationship-right-fit
    https://migraine.com/living-migraine/how-to-evaluate-doctor
    https://migraine.com/blog/really-find-headache-specialist
    h https://www.ucns.org/Online/Online/Diplomate_Directory.aspx?hkey=f8f00552-f924-4ef6-a9bb-6023b1cd341b
    https://migraine.com/living-migraine/how-to-find-a-neurologist-or-headache-specialist
    I hope I didn't overwhelm you with so much information! Go over it when you're up to it and I look forward to hearing from you, Nancy Harris Bonk, Patient Leader/Moderator (team member)

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