What It's Like to Live With Hemiplegic Migraine

You may be able to remember a time when you woke up in the morning to find that you had a very distinct sensation in your hand knows as “pins and needles.” Usually, this is relieved once you move around a bit and allow the blood to flow back into your hand. You may also be able to remember a time when you’ve had a really bad, unshakable headache. You probably remember how it kept you from doing your everyday activities. Now, think about those two feelings and imagine having that “pins and needles” feeling radiating down the entirety of one side of your body, coupled with a debilitating migraine. Imagine these kinds of attacks happening to you a few times a week, and in some cases, a few times a day. That is what life is like living with hemiplegic migraine.

Hemiplegic migraine is referred to as a “migraine variant.” The word “hemiplegic” means paralysis on one side of the body. Someone with hemiplegic migraine experiences temporary weakness on one side of their body, sometimes involving the face, arm, or leg. It is sometimes accompanied by that feeling of “pins and needles” or numbness. Some people may even have speech difficulties, vision problems, or confusion. These symptoms may be mistaken for a stroke. The weakness on one side of the body generally lasts from one hour to several days. The migraine follows the weakness, but sometimes the migraine will precede the weakness or be absent.

 

It is hard to describe what it is like to live with hemiplegic migraine. There tends to be a stigma attached to migraine disorders in that they are “not severe” and you can “get over them.” This couldn’t be further from the truth. Hemiplegic migraine is a chronic illness and is a real and valid disability.

My story with hemiplegic migraine began when I was around 8 years old. I am now 17 and just receiving a diagnosis. Since I have panic disorder, I had to consider that the symptoms of hemiplegic migraine mimic a stroke, and a stroke can often mimic the symptoms of a panic attack. I always chalked it up to that and did not speak up. I am so glad that I finally did.

A migraine attack, for me, does not always look like the stereotypical image of what a migraine “should” look like. I am not always “bed-bound” with the lights turned off in my room (but sometimes, it does get to that).

This is what living with hemiplegic migraine is like for me:

Hemiplegic migraine means shutting all the blinds in my house because the sun hurts too badly.

Hemiplegic migraine means not going anywhere, not even sleeping over at my friend’s house, without being armed with ibuprofen, cooling patches, and Tiger Balm.

Hemiplegic migraine is turning down plans and not showing up to appointments because I would rather sleep than be awake with the pain.

Hemiplegic migraine is having to push myself through my homework because I can feel my fingers starting to go numb and I don’t know how much longer I will be able to write for.

Hemiplegic migraine is not being able to walk as far or as long as I used to be able to because the right side of my body is weakened from so many attacks.

Hemiplegic migraine means being in so much pain that I just want to cry, but having to put on a brave face because the world does not stop for a migraine.

Hemiplegic migraine means feeling isolated, alone, and depressed, and sometimes wondering why I have to live at all if I’m going to always be in so much pain.

Hemiplegic migraine attacks are terrifying and isolating, but they are valid. If you are struggling with hemiplegic migraine, know you are not alone. This pain won’t last forever. You are worth the fight.

Thinkstock photo via DeanDrobot.