In early 2022, Sarah Alexander-Georgeson experienced a sudden change in her migraine symptoms. Still battling a severe headache, her mouth began to droop as her left side became paralyzed. After lengthy investigations, doctors concluded she had hemiplegic migraine (HM), which can mimic a short-lasting or mini- stroke.
Today, Sarah shares “Part II” of her HM story. It explores the terrifying reality of her symptoms, extracts from her “HM diary,” and how lifestyle changes eventually eased the severity of her flare-ups.
It has been nearly a year since I first wrote about my hemiplegic migraine diagnosis and how, when I first experienced it, I thought my migraine attack had turned into a stroke. This was because the left side of my mouth sagged, my eyebrow drooped, and my left side became paralyzed to the point I lost the ability to speak or concentrate.
However, my diagnosis took a long time because my HM symptoms were atypical. I would sleep for upwards of thirty hours whenever an HM attack hit. Upon awakening, I'd have zero energy. I would be unable to do simple everyday tasks like making a drink or dressing myself. I didn't realize this was a severe form of migraine postdrome - and neither did my doctors.
Hallucinations became part of my HM symptoms
Once my neurologist diagnosed me, I began treatment and kept a diary to track my hemiplegic migraine symptoms and developments. I noticed poor quality sleep, overexertion, and stress were the recurring factors in setting off an HM episode. As much as I tried to avoid these migraine triggers, I was having a particularly rough time at home. I had to deal with flare-up after flare-up, and I felt very alone and frustrated.
Then my symptoms started to get "weirder." I experienced hallucinations during a hemiplegic migraine attack, such as phantom sounds, smells, and tastes. One night, I could hear music. The house was silent bar the dog's light snoring, but I was positive a song was playing through the walls.
Another time, I heard birdsong late at night. I've hallucinated the walls moving in on me with my brother screaming for help in the darkness, among many other scary things.
Then came the bad taste in my mouth, which wouldn't disappear no matter how often I brushed my teeth. I've experienced flashes of light in my field of vision, black spots, larger black discs, and, a few times, loss of sight altogether. As you can imagine, this was terrifying.
I kept a “HM symptom diary” to share with my doctor
These are some of the extracts from my HM diary at the time:
"I feel like my face is slipping off."
"The tingling in my left leg has turned to numbness now."
"My scalp is so sensitive I can't even lie down."
"I could fall asleep sitting up."
"I can't feel my face."
"Couldn't lay on the pillow any longer as the pressure on my head was too much."
“Felt foggy and my body was extremely weak."
"Very sensitive scalp and feel like even my hair follicles hurt."
"Neck extremely painful, like head was too heavy."
"Left side of jaw twitching for hours."
"Pain behind left eye horrific, pressure from pillow too much. Weak left side. Speech affected. Light sensitive."
"Speech got worse, repeating words, jumbling up sentences, not making any sense."
"Ability to walk and talk severely affected. I was really scared and considered calling an ambulance because I felt really bizarre, really floaty; I can't explain it."
"Wobbly, no strength in arms, very fatigued postdrome, unable to concentrate."
Lifestyle changes helped with my hemiplegic migraine attacks
My circumstances changed last year. I left a long-term relationship and moved back up to the North of England, where all my family and friends live. The difference this has made to my condition is massive.
I am so much happier, my stress levels are lessened, and I am surrounded by people I love. I was very isolated where I used to live and spent a lot of time on my own. But nowadays, I get out, do things, and see people (my other health conditions permitting). It has given me a new lease of life.
Of course, my treatment plan has been adjusted, and I have regular check-ups with my neurologist and migraine nurse. Still, I honestly believe many HM flares were caused by the amount of stress and upset I was holding inside my body.
I’ll take this progress as a “win.”
My last hemiplegic migraine flare was approximately four weeks ago. My body didn't shut down for 30 hours as it had once done. I was weak on my left side but not completely paralyzed. My face and eye drooped, and I was slurring my words. But the postdrome lasted an hour or so - considering how it used to be, I'll take this as progress.
I still get chronic migraines and headaches, but HM took over my life. Now my HM attacks are much more manageable, and I, for one, am very relieved about that.
The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.
NPS-ALL-NP-01016 JUNE 2023