Hemiplegic Migraine and Peripheral Neuropathy

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (14)
  • mrst53
    8 months ago

    I started having Hemiplegic migraines 45 years ago and NO ONE knew what was going on then. I tried for years to find a doc that would know what I had. Finally, I did and he thought at the time, that it was too many hormones being released at one time. He said that there were other women like me out there. AHA finally I was not crazy and alone. He told me what not to take(triptans) and to keep taking the meds I had been taking. Thank goodness I only seem to have them when I am under a huge amount of stress. The first one took away my speech temporarily, and when it came back, it was hit and miss for a week or so.. I have had no consistent problems from each attack. Thank God. I take my med and go to bed with ice packs whether the headache has started or not. It will come, it always does.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    mrst53, I’m sorry you have the speech issue with your hemiplegic migraine attacks, that must be so scary! I’m glad that you found a doctor who gave you an explanation. Thank you for being here and I’m sorry it took me so long to respond! Take care. ~elizabeth

  • greeneyednanny
    8 months ago

    Until I read the post by Elizabeth Roberts-Zibbel I didn’t know of anyone else who has hemiplegic migraines! These are very complicated migraines and I’ve not found anything yet that helps or prevents them. I too have pain almost constantly in the trigeminal nerve, some days the pain from that is nearly unbelievable. People always say I need to take Imitrex and similar meds, but triptans are not recommended for these migraines as it could actually cause a stroke. Even on a rare day without a migraine, I often can’t quite feel the bottom of my feet, so in certain shoes I don’t feel very confident of movement and I’m clumsy enough already! All people with migraine, no matter what kind they are, have my deepest sympathy and wishes for better times ahead through research and more effective medications. Take care of yourselves folks.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    greeneyednanny, thank you so much for your comment. I know that trigeminal neuralgia is extremely painful and I feel lucky that I haven’t had any trouble with it since the two migraine attacks I wrote about here. I think CGRP affects the trigeminal nerve; those meds might be something you could try. I hope you’re doing okay, take care! ~elizabeth

  • CHawk
    8 months ago

    This is the first time that I have seen or read about the connection to peripheral neuropathy, and migraine and vascular headaches. For years when I was diagnosed and treated for pseudo tumor cerebri with useless and dangerous medication, spinal taps, and finally one LP shunt surgery and two VP shunt surgeries while on active military duty I was constantly and dismissively told that I would just have to live with both types of headaches. Then sure enough out of the blue I mysteriously and unexplainable developed peripheral neuropathy. I tried to tell the VA, my primary care physician, the Neuro-ophthalmologists, and regular ophthalmologists that there was a connection but was and is constantly put off. A couple of days before Mother’s Day as I awoke and proceeded to get to my kitchen, the migraine that woke me up made me extremely dizzy and faint no more than 5-6 steps from my bedroom and the safety of my bed. My legs gave out and I head a hard fall just inside my bedroom which resulted in broken bones on both sides of my left ankle. Surgery was delayed for about 10 days and now I have to suffer through another pain. Why doesn’t those that are SUPPOSED to be know and up-to-date refused to do so. Hopefully, I can email this article to myself to support what I think is a truth that is being ignored by the so-called professionals. Pseudo tumor cerebri, migraine and vascular headaches, and peripheral neuropathy have a connection no matter how slight it may seem. That connection has destroyed not only my ability to financially provide for myself but has turned me into an introvert with self-esteem and self-confidence issues that rate as below the lowest numbers on a scale of one to ten. Every day and almost every hour the relief from checking out rises it’s ugly head but I am not going to allow it to take a hold of my life as my current medical conditions have done. Sorry, first time.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    CHawk, I’m so sorry it took me this long to reply to your comment. I haven’t been in the best place emotionally but am starting to do better. I ALSO fell because of my neuropathy! I didn’t break my ankle, but severely sprained it. I’m so sorry that your headaches have caused such horrible consequences in your life. I know so many people here understand what you’re going through; I myself finally went back to work, part time at a library, after being on disability. I hope you’re doing okay. Do you see a therapist? I go to one who specializes in chronic pain and it helps a lot. Take care and thanks again for being here. ~elizabeth

  • lightweaver
    8 months ago

    Having severe migraines were bad but not as bad as having MS. I have neuropathic in so much of my body I understand. It went into my hand and am losing use of it. It sure is hard to know what the heck is going on.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    lightweaver – I hope you have received some answers and have regained use of your hand! Take care and thank you so much for commenting ~elizabeth

  • Joanna Bodner moderator
    8 months ago

    Hi there @lightweaver, Do you also have MS as well? If so, have you been able to explore our sister site, MultipleSclerosis.net? I am so sorry to hear that your most recent symptom of losing use of your hand. Have you been in close contact with your doctor to discuss this symptom? We really appreciate you being here & sharing your experience with us. Take good care. Joanna (Migraine.com Team)

  • lightweaver
    8 months ago

    I am on that site as well.

  • Ellensr
    8 months ago

    Hi Elizabeth, You are not alone. I started having Neuropathy about 5 years ago after 31 years of bad migraines. It affects my feet and hands occasionally. During a migraine 8-15 hours with medication; the Neuropathy is what prevents me from drifting off to sleep at night. I can’t put my feet in a comfortable position. Sheets touching my toes is just awful.

    I have also had strange muscle cramps and spasms, even though I have increased my water consumption. Right before onset, the follicles in my hair, nose, ears become agitated and itchy. That is enough to give me anxiety, because I know 100% what is coming. It is hard to know exactly when however, it could be 2-8 hours away. So taking a Tryptan is often tricky. If not right on the spot, I can have low grade (M) for a week or more.

    I have not tried CGRP. The studies confirm it is a monthly treatment so I would think one would have to wait 1 month to see if it works. I can not get it yet, and as with almost everything I have tried, I lack great hope or faith.

    I wonder what 31 years of vasoconstrictors do to ones nerves and veins. The only thing I can offer advice about as to live as clean and chemical free as you can. That way you can tell your Dr. that you are doing everything right.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    Hi ellensr, thank you so much for sharing and I’m sorry it’s taken me so long to reply. I am so glad you commented, because I’ve been feeling very alone with this as my neuropathy is only increasing and YES I can’t get comfortable at night either! My neurologist said that it is not from migraine, but part of me is glad because I am still taking Imitrex and would hate to stop. I haven’t had any hemiplegic attacks since those written about here, but the neuropathy from those is a huge problem. I sprained an ankle from it, and now have a bone spur on the right side from favoring my left. I also wonder about the medications we use – for example I had a LOT of DHE from approx 1990 until 2010. Regarding CGRP: I noticed a difference right away. Aimovig wasn’t successful for me, but so far Ajovy has been. I hope you’ve had the opportunity to try it! Thanks again for being here! ~elizabeth

  • Selena Marie Wilson
    8 months ago

    Allodynia has been one of my constants for years (I had an ER doctor tell me once it wasn’t possible with chronic migraine — it IS). Numbness and tingling in my face on my “migraine side” has also been a regular thing. I’m so not on good terms with either, but allodynia is frequently as bad or worse than my usual baseline pain level.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    Selena, hi! Thanks for your comment and I’m sorry to be so late in replying. How long ago did that ER doc tell you you couldn’t have allodynia from migraine? That is ridiculous. I have a lot of trouble with it also. My migraine attacks vary as far as what side they’re on, but my left side has been numb / tingly / painful now for a year and a half. Now I have a bone spur on my right heel from favoring my left. It. Never. Ends. ily lady. I hope you are hanging in there.

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