Hemiplegic Migraine: My Last Nerve

So what did I miss? I feel like Thomas Jefferson returning from France after the Revolutionary War, except, in the musical Hamilton, anyway, he was having a blast in Paris “meeting lots of different ladies.” During my own hiatus, I was trapped in bed, experiencing the worst six weeks I’d had in many many years. Where have I been? To hell and back.

Emergency room visits

In my first Post-CGRP story (“My Bad Month”) I discussed needing to return to the ER a few weeks after my last treatment, and then returning again and again until finally I was admitted for inpatient care for the first time since 2012, which was right before my hospital instituted an admission rule change. This time there was no DHE on site, the ergotamine-based rescue medication infusion most frequently administered in a hospital setting (though I used to inject myself at home as well). The liquid serum, last-chance type rescue med has become scarcer and scarcer over the past several years; I know that many larger hospitals are still able to keep it in stock, but my small town local hospital was not. Because it is now known that ergot medications are just as likely to cause rebound / MOH as any other, besides the very uncomfortable side effects, I was not overly disappointed to be receiving a different regimen. I was relieved to be there, and my pain was successfully reduced.

New migraine symptoms

However, my migraine situation only got stranger after my release from the hospital, when I found myself entering completely new territory, experiencing symptoms I’d only read about and wondering where in the world they were coming from. At first it was severe neck and shoulder pain, which I decided must have come from trying to sleep with my IV arm held straight out, stiff and wrapped so that my movements wouldn’t cause the line to become occluded, setting off the shrill alarm obviously so detrimental to migraine pain reduction. I had my shoulder looked at and I did have a pinched nerve which was aggravating the migraine on that side. I was given Prednisone and a muscle relaxer.

Speedy migraine attack

One week after my release, while treating the pinched nerve with medication and staying as relaxed and quiet as possible, a new migraine suddenly descended so fast I was immediately alarmed. The most frequent question ER doctors ask is “Does this feel like your typical migraine?” Already with the speed of this attack the answer would be no. My mouth and jawline on the right side of my face, and then my cheek itself, felt oddly cold and excruciatingly painful. I was envisioning steaming dry ice; a sunburn and frostbite. I pressed my hand to my cheek as my right nostril and right eye began streaming. Then my temple and forehead exploded into what I can only call my “normal” head pain with migraine but somehow far more intense because of how quickly it appeared there, like a thunderclap. I tried to describe to John what was happening and he googled Prednisone and Flexeril side effects as I did my best to breathe, stay calm, and not alarm the girls.

Numbness and tingling

The next thing I knew, the odd cold feeling from my face seemed to shoot down past the now forgotten stiff neck and shoulder into my arm, which I frantically shook because it felt like it had fallen asleep from me lying on it or holding it above my head for a long time when of course neither of those things had been happening. My arm felt cold as well, like sunburn, similar to the allodynia I’ve experienced the past several years, but again, like dry ice. I could still make a fist but it felt very strange and the next thing I knew the numbness and tingling had continued down my leg. Looking into a nearby mirror, I saw that my right eyelid was puffy, another new symptom.

Aphasia

At that point I stopped thinking side effects and wondered about hemiplegic migraine, the rare scary type that mimics stroke and sends so many to emergency departments thinking they have something seriously wrong with them. Of course, they do, but it isn’t going to immediately kill them the way stroke can, and so they are often told after tests come back negative “this is just migraine.” I spoke slowly to John, listening to my words, knowing they sounded normal and clear and that I wasn’t experiencing the aphasia that can sometimes happen. I tried to stand up and collapsed back onto the couch; the muscle weakness in my leg was pronounced.

Hemiplegic migraine

Here is where I will mention again that I still don’t have health insurance due to a paperwork error in October 2016. Our hospital does negotiate with those who must self-pay, but heading back to the hospital already was not at the top of our list of desired actions to take. Since my head, while pounding mercilessly, was clear and I was able to speak and think logically, we decided to wait at home and that most likely it was my first hemiplegic migraine experience. Isn’t that interesting, I thought. Why in the world.

For those of you anticipating the release of the first CGRP-antagonist medicine (erenumab from Amgen), I want to reassure you that there is absolutely no reason to believe there will be a discontinuation syndrome from the CGRP meds based on only my experience. While it’s true that I hadn’t had numbness and tingling before, the severity of my pain and the new symptoms following the end of the second trial have not been reported by anyone else my study coordinator knows of. To my knowledge there have been no side effects reported with either the use of, or discontinuation from, any of the four CGRP meds being developed at all. I fully believe every person with migraine disease has MUCH to look forward to and that the medicines are as safe and effective as we have been hearing, and I will use erenumab when it is released without hesitation.  Also, while I still have numbness and tingling on my left side, my migraine attacks have returned to their usual style and severity, and may be even less frequent than I experienced before the first study.

Have any of you dealt with odd and inexplicable secondary symptoms you knew were probably connected to migraine? Please feel free to share.

 

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 (11)
  • ccf23
    12 months ago

    Oh Elizabeth I am so sorry to hear about this development. I was actually terrified just reading your account of trying to decide if it was time to go to the hospital. I recently had a retinal migraine that came out of nowhere, I live alone, and had to figure out what it was and what to do. Is it a sroke? Aura? Wait, can I smile, what day is it, who is the president? Oh. Him. That was like a cold bucket of water. No fun. I dread the Hemiplegic diagnosis because it could mean an end to triptan use and that is MY precious. Not happening. I have a system as you describe and will go to great lengrhs to keep it. I appreciate that you consider your recent symptoms in light of your participation in the clinical trials that we are all so excited about. I agree with your reasoning that there is no clear danger in taking the CGRP meds when they come out, but I am reminded of my usual skepticism about the greatest new thing. It’s back. At the same time, I have seen quite a few anecdotal accounts of migraines evolving over time, especially chronic migraines, and it is not for the better. I have picked up a few new diagnoses myself lately. Sigh. I wish you well always and hope that this cycle breaks for you. Permanently!

  • DawnJ
    1 year ago

    Summer 2015 my husband, who has suffered from migraines his entire life, had stroke like symptoms,, His brother who is a family physician felt it was a hemiplegic migraine. 18 months later after multiple drs, including 3 nuerologists, 4 hospital visits, and over $82,000 in costs, he was diagnosed with migraines.
    He can no longer work.
    Drs need more education about hemiplegic migraine! They will only recognize one after their first patient with it suffers with pain, multiple misdiagnosis, and life changing emotional fatigue.
    Thank you for your article. I have been waiting for this subject to be addressed.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Dawn, I am so very sorry you two had to go through SO much expensive, time consuming struggle over his hemiplegic migraine. That is so frustrating. It is interesting to me that once reaching the actual diagnosis, there is truly so little understood about it and it feels we’re just left on our own, told not to use the treatments that have always worked for “regular” migraine, and we’re just supposed to… deal with it? It’s really kind of terrifying and i’m sorry your husband is going through it too. Take good care and thank you for your comment. All my best, elizabeth

  • MidrinMan
    1 year ago

    One beautifully frigid morning I was in the pool starting my first lap. This particular morning. I felt out of sorts. Felt discombobulated. I usually feel overheated so the cold pool would be a godsend but today felt different. I got to the end of the lane and felt ………………….odd. The right side of my head felt…………… odd. Or was it my left? I knew my chin was touching my chest upon standing but didn’t realize how dramatically. Like a limp noodle I’m told. The blue haired ladies from the senior morning water aerobics came over to lend assistance. I didn’t understand. Why are they here? I said I’m okay. I felt ……..odd and “sparkly”. I made my way to the ladder and that’s when I knew something was wrong. The (right?) side of my body wasn’t cooperating. It was tough getting out of that pool but I figured it out. I sacheted into the locker room, (or was it a side step do si do?) got dressed, got to the car, got home, called my doc’s number. It was Friday morning. Monday I got a return call. I was told I need an MRI “STAT!!”.

    They think I had a stroke.

    Uh-huh.

    Stay put.

    Ok.

    Monday turned to Wednesday, turned to Thursday. I called them back.

    What’s happening?

    They said they’ll get back to me.

    They didn’t.

    I called a place in Portland. Got a spot the next morning and drove up there. Told my story, got in, got the test and drove home. Hour and a half one way. Later I got scolded for the facility “not being in my network”. You can’t have a stroke outside of your network while you have Kaiser Permanente apparently. SIX MONTHS LATER I got an appointment with a neurologist old enough to be my great grandad. Okay I exaggerate. My grandad. I had a “migraine event”. All the symptoms of a stroke, none of the scar tissue. Carry on. Nothing to see here. Later I would find out that nobody in Salem would do the MRI for the $300 that Kaiser was willing to pay. They wanted $800.

    Kaiser told me “No MRIs were available”.

    Uh-huh.

    In other words, no one was giving them away. Later on, during my annual doctor shuffle (where the insurance coverage gets crappier and crappier so the old network drops you and you have to find a new doc that provides you jiffy lube medicine for jiffy lube pay) . Anyways, the new doc decided Midrin is a vaso constrictor and people with stroke risk cannot take it. I had loaded up as much as I could on the old script and that’s now my lifetime supply. NOTHING works as good as the midrin does.

    NOTHING kills you faster than crap healthcare.

    I used to do things. Not so much anymore. Just sit around writing Emo poetry on migraine websites ;).

    Wife keeps yelling at me to get a job. I keep trying and failing. Headaches. I had one volunteer position with legal aid oddly enough where I reviewed medical and psyche charts for failed disability cases. That was an education. But I had to let it go. My body said time for more pain.

    Another thing I learned on my personal time. No law firm would initiate a lawsuit against Kaiser Permanente in Oregon. They’re untouchable. Same story, different law firm. I tell my story, lawyer is very interested, I say Kaiser, lawyer says I can’t help you. The end. Next lawyer. Same story. Over and over. The statute of limitations is up now. All I can do is warn others. When we go single payer, there will be no liability or accountability there either. Medical rationing is here to stay.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    UGH!!! Is what I have to say about that, my new friend emo poetry writing Midrin Todd. I deliberately see a doofus neurologist bc I have a good system going and don’t want any smarty pants messing with me. After the above experience he said the same thing about my precious Imitrex. He recommended aspirin (?!) and I said “Ruined my stomach on NSAIDs remember?” He said, oh right. See you in 6 months. I’m pretty sure he will refill the imitrex. I’m trying to take less, but it’s my Midrin (which never worked great for me). So you stocked up on it… since HM isn’t actually a stroke could you carefully try it and see how it goes?

    I haven’t had insurance at all for a year. Paperwork mistake on my husband’s part. So I didn’t have an MRI but did have a CT which we’ll be paying for until after we’re dead.

    I don’t work outside the home anymore either.

    I do hope you were able to have a nice day today. Take care MidrinTodd. ~elizabeth 🙂

  • MidrinMan
    1 year ago

    When my vision goes, I take Midrin. Restores my vision every time.
    My wife says it’s old and outdated and should be thrown out.
    I tell her to eat dirt. Lovingly of course. Maybe complement her shoes or her hair.
    Meanwhile I find new hiding spaces for my precious.

  • determinedmigrainegirl
    1 year ago

    First, I would like to say that I’m so sorry you went through this, and that you experience migraines at all.

    Several times in the past few years I have had one side of my body paralyzed during some of my migraines. It has happened on my left and right side during different migraines, and it comes on like a stroke. I can understand what people are saying to me, but I am unable to speak. The paralysis will be on one side of my face and the leg and arm of the same side. When it happens it is frightening as hell!

  • Majikjoyce
    1 year ago

    I have these exact symptoms. Numbness in one side, drooping face on same side, I cannot talk at all or write. When I first had a hemiphlegic migraine I was evaluated for a stroke but I missed the criteria. I was hospitalized for 3 days while they ran all types of tests mine you I still have the symptoms. It is one of the most frightening things ever. So I know how you feel. Now when I get a hemiphlegic migraine I just wait it out.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hi determined,

    I am SO grateful to not have had the full-on paralysis or cognitive issues. I’m sorry you do because it sounds *awful.* Thanks for your comment and take care! ~elizabeth

  • Anne
    1 year ago

    I have the weird nerve pain, numbness and muscle weakness with migraine too. It hurts to walk or straighten my arms. I someone times know that a migraine is coming when I can’t seem to hold things in my hand without dropping them.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hi Anne, thank you for your comment! I wonder if these are symptoms that will stay with me now. Have you always had it, and does it correspond with the side your head pain is on? ~elizabeth

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