Hemiplegic Migraine and Peripheral Neuropathy
Last updated: May 2023
When my first hemiplegic migraine struck in August, I thought I had enough knowledge to handle it myself, but I treated with Sumatriptan, which I know now isn't recommended due to the stroke-like symptoms. It did help the pain, but the numbness, tingling, and muscle weakness on my right side continued. I finally fell asleep and in the morning was totally unable to walk. After spending that whole next day in bed, I decided I was going to need to acquire a cane. Which I did, and needed to use it when I went to help with our youth theatre auditions; another first, my disability suddenly very, awkwardly visible.
Slowly feeling the migraine break up
Slowly the numbness and tingling improved and then it began to migrate, just like my worst head pain sometimes does; when my pain changes sides I can usually breathe a sigh of relief that the migraine is “breaking up.” Over the next week I would occasionally experience the severe, cold feeling jaw and cheek pain as the numbness settled in on my left side, seemingly to stay. Also staying: the swelling of my right eyelid, and the fact that I had very little pain-free time.
Extra sensitive follicles
Could this be a discontinuation syndrome from the cessation of CGRP therapy? I found that unlikely, but couldn't think of any other possible changes that could bring on such new and different symptoms. For the most part, I've lived my post-childbirth life experiencing the same horrible, nearly constant attributes of my particular chronic migraine disease. I don't like those symptoms of course, but at least they were predictable and consistent. The only change before this one had been the developing of allodynia, which the research I did revealed had to do with nerve pathways. My aging body, its daily battle with pain and medicine and mood creating what I pictured as sensitive follicles, little red hot capillary-like nerves that are just on edge all the time.
Coincidence after CGRP trial
I contacted H, the clinical trial coordinator, and she confirmed that none of her other patients, and no one she'd ever heard of, had suddenly developed hemiplegic migraine following the end of the trial. Just a coincidence then? What else could be going on? The severe and sudden cheek and jaw pain seemed like what I'd read of trigeminal neuralgia, again, a nerve issue. Two weeks passed and I planned to hold out to see a doctor until being insured again in January, since I could walk reasonably well. I researched peripheral neuropathy. I decided to just take one day, one hour, even, at a time.
A second hemiplegic attack
But then around two weeks after that first hemiplegic attack, on my 44th birthday, it happened again. I felt the now-familiar severe, sharp, burning pain in my jaw and cheek, the cold, the spreading downward and upward at the same time. Numbness and tingling and cold fired back on my right side again. This time, I decided to go to the emergency room. I described the one-sided numbness and tingling, but due to my clear speech the professionals there were not overly alarmed. My pain was treated, they took some blood and wheeled me for a CT scan which of course was clear (negative). I was never again completely unable to walk, but I have been strangely off balance and running is pretty much an impossibility. And my eye is still swollen. The numbness/tingling/weakness is constant on the left side.
Opening the gates to peripheral neuropathy
And so, I imagine my body like an old-fashioned road map. Having lived with severe pain for forty years, the nerve pathways which started like small dirt trails, barely visible through the woods of veins and bones and muscles, became gravel paths. After a few more years, they had to be paved for cars as I became chronic and soon my body was filled with two-lane interstates. That's when the allodynia started. I felt like during the four years of my clinical trials, though, the construction to expand the nerve pathways was suspended as I enjoyed varying but long-term relief from my symptoms. But then the second trial ended and the “Road Closed” signs disappeared, and instead of the interstates being gradually filled with cars again like I expected, it was like a time warp where those two-lane roads immediately became huge superhighways with 75 mph speed limits and buses and trucks and those tractor trailers that carry new cars from the factory. And boom. It seems that hemiplegic migraines opened the gates to peripheral neuropathy and trigeminal neuralgia and the biggest nerve pain party on the planet.
So now, added to all the other daily symptoms I've had for the last ten years, the left side of my body constantly feels like it fell asleep at some point and never stops tingling. My hand and foot are always cold. Cold water hurts, and hot water feels cold. Or maybe the numbness and tingling will eventually go away? I have to wonder though, as I continue aging, what else is going to develop.
Have others downplayed your migraine pain?