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.
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.
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.