Here's What It's Like to Have Hemiplegic Migraines

Patient Expert
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“Can I have the car keys?” I ask, pushing my chair away from the table. Half-eaten congrí and yucca lie abandoned on my plate. The air in the restaurant is static and heavy, despite the alfresco seating. “I need to get something for my headache.”

My tongue and nose are numb. Visual auras are bobbing and blending, already beginning to block my vision. I anxiously run my fingers along the edge of the bracelet on my left arm, wondering if I’ll need to use it today. To most people, the bracelet appears to be nothing more than a simple gold cuff. To me, it’s a lifeline; an emergency contact number and “hemiplegic migraines” are inscribed on the inside and the universal medical symbol is etched on the outside.

Not everyone with migraine disease would necessarily wear a medical alert bracelet. But my migraines aren’t typical. I have sporadic hemiplegic migraines (SHM) – a rare neurological condition that causes symptoms that mimic a stroke. In addition to the pain of a migraine, SHM attacks may include visual disturbances, temporary paralysis, memory loss, profound confusion, speech impairment, nausea, and extreme light sensitivity.

“No,” says our Cuban guide, curtly denying my request, barely looking up from her plate. “Only the driver is allowed to unlock the car. You need to wait until he’s finished his lunch.”

I glance toward our driver, seated at the end of the table. Between the orbs floating in front of my eyes, I see he still has a heaping plate of pork. By the time he finishes his food, I may be mute and immobile.

I’m in the middle of an SHM attack, and she wants me to mind my manners.

“His lunch? How about my life?!” I want to scream at her. But I am reluctant to be seen as rude. I bite my tongue and remind myself to stay calm; stress only serves to aggravate SHM.

I turn to my travel companion in the hopes he’ll convey a sense of urgency to our guide. “I’m getting a migraine,” I tell him quietly. “I really need to get some medicine out of the car.” He offers to retrieve it, but our guide is unbending. “You need to wait until the driver is finished with his lunch,” she repeats.

Feeling defeated and desperate to remain calm and conserve my energy, I slump in my seat, close my eyes, and focus on breathing slowly – imagining that if I can slow my breath and heartbeat, maybe I can stall or even abort the SHM attack as well.

While I wait, quietly assessing each tingle in my face and body, the aura in front of my eyes, and electric pain in my brain, I think about how I – and fellow SHM sufferers – can avoid a repeat of this frustrating and dangerous scenario:

  • Don’t downplay your condition. I have a tendency to minimize the severity of SHM when I explain it to travel mates and tour operators because I don’t want to seem dramatic, worry my travel companions and hosts, or be prohibited from joining an activity. Be sure to clearly communicate your condition and any emergency protocol to family, friends, and those that travel with you. If an emergency arises, they will be better prepared to spring into action rather than sit back and let you suffer while they finish lunch.

  • Inform, confirm, repeat. It is standard to submit medical information to tour operators prior to travel. If they don’t require it, send them any important details (such as allergies, food restrictions, medical conditions, etc.) anyway. While we expect responsible operators to review our info thoroughly, they may not. I often hesitate to mention SHM at the outset of an adventure because I don’t want to appear needy or weak. But if I had reminded our guide on arrival about my condition, perhaps she would have reacted differently when I experienced an attack.

  • Speak up. I’m often reluctant to speak up – even at the risk of my own health and safety. I should have repeated my request for the car keys or insisted they unlock the car so I could get what I needed. I didn’t want to seem rude, so I backed down. But as the saying goes, the squeaky wheel gets the grease. So maybe the vocal SHM sufferer gets the meds, transport to the hospital, or anything else she needs… if only she says what she needs before it’s too late.

Having watched everyone at the table enjoying their lunch while I endured an SHM attack, I’ve realized there are ways other people can help, too:

  • Take my word for it. I know you can’t see the auras, feel my face tingling, experience the electric pulses, or wade through the fog in my brain. From the outside, everything probably appears “normal.” But if I tell you I need medicine, water, a dark room, or a ride to the hospital, believe me.

  • Offer to help. One of the scariest things about an SHM attack is knowing that I might temporarily lose my ability to see, think, or speak. If you are with someone experiencing an SHM attack, bring them water, get them their medication, and ask what you can do to help. If they don’t respond…

  • Take action. The first time I had an SHM attack, I had no idea what was happening and my speech was impaired, so I couldn’t communicate or ask for help. Thankfully, the friend I was with saw that I was unable to respond and took me to the nearest emergency room. If you are with someone that is non-responsive, get them to a hospital where medical professionals can give a proper assessment and treatment if necessary.

About 30 minutes passed while I waited in pain. By the time the driver finished his lunch and allowed me to get the medicine I needed, my vision was almost completely blocked, my face and the left side of my body were numb, and the headache was unbearable. Thankfully, I didn't end up in the hospital that day; the next time I may not be so lucky. But one thing is for sure: I won't prioritize politeness over my health again.

See more helpful articles:

Sporadic and Familial Hemiplegic Migraine - The Basics

Hemiplegic Migraine May Cause Brain Damage

New Analysis of Triptan and DHE Use in Basilar and Hemiplegic Migraine