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.