Sigh. I had a new hemiplegic migraine hit around midnight, and I took one of the new medications Doc sent me. Unfortunately, it didn't help. As many of you know, I like to write, and I felt I wanted to write about this, even if it was a one-handed job.
Hemiplegic migraine is considered a rare form of migraine, so much so that most doctors/neurologists haven't met a migraineur with them. For those wanting to read articles about hemiplegic migraine, he're some good links:
Lastly, please understand that the majority of typical headache/migraine treatments don't touch these. Caffeine or lack thereof, Excedrin/Tylenol/Ibuprofen/Aspirin/etc, sleep, diet changes, stress reduction, biofeedback, yoga… none of these work to control hemiplegic migraine.
Anyway, here's my early-morning rambling perspective from the throes of a hemiplegic migraine. At least I can type!
Let me add: this is not a stroke. I've been through the full workup for stroke, and those have been soundly ruled out.
A Raw Look at a Hemiplegic Migraine
My nemesis is back. One minute my world is normal. Then nothing is normal.
When a hemiplegic migraine attack starts, it’s like something in my brain snaps, and my world shifts 90 degrees. The right side of my face goes numb, as if I just had dental anesthesia injected into half of my face. My right eyelid droops, as does the right side of my mouth. My face has just betrayed me, as it shows to the rest of the world what is coming, what is happening.
As the numbness spreads down my body, my right hand becomes weak. I cannot grip anything, and forget having the strength to prop myself up. Trying to remove or put on clothing means using my left hand to guide my arm in or out of clothing, as if dressing a small child.
My right leg is the next to go out on me – literally. The numbness is generally mild in my leg, but the effects are anything but mild. My drop foot becomes more pronounced, as motor control in my ankle becomes iffy. My knee doesn’t want to lock and is prone to giving out unexpectedly. Bad attacks find me having to reach down and manually move my leg around in bed, as if I was paralyzed in that limb. Walking becomes very difficult and tiring.
Along with the leg issue comes balance issues. It doesn’t take much for me to overbalance or collapse, and I find myself on the floor at least once with each migraine. I now have a collection of mobility aids: forearm crutches, a rolling walker, and a wheelchair. Depending on where I’m living, I might be confined to my home just because I can’t handle the stairs without a serious risk of falling, or because movement is so fatiguing.
I have reluctantly come to accept all of the physical issues from these migraines, but one more symptom is a constant source of frustration: aphasia. My mind is working. I can think and process what’s going on around me, hear what others say, understand fairly complex concepts. But my ability to communicate is very impaired. You want me to type? Sometimes that’s working, sometimes not. Handwriting? Same thing. Sign language? That generally works, but not too many people know how to sign. Speech? Totally doesn’t work. I’m either totally nonverbal, or all that comes out is sounds, fragments of words, stutters, and a lot of frustration. I feel like my ability to interact has been taken from me, and that’s a very frightening thing.
Emotionally, I’m affected. I’m frightened at times during an attack. I’m frustrated that my body isn’t working like it’s supposed to, and that I can’t communicate adequately. I feel like I’m a burden to others, having to have so much done to help me. I desperately want the attack gone, want my independence and my voice back. I worry how much this will affect future plans I have, my ability to go back to work. I wonder if we’ll find the “perfect” medications to curb these attacks. I’m afraid of how others will treat me, react to me, stare at me. Wonder if I’m pushing too hard to try to lead a normal life, or if I’m not forcing myself to do as much as I need to do.
Welcome to hemiplegic migraine.