Sarah Alexander-Georgeson had been living with chronic migraine since she was a teenager. She learned to manage her condition, until, one day, her symptoms changed. Instead of the usual prodrome and headache symptoms, the left side of Sarah’s face sagged and she was unable to speak.
After several appointments with her neurologists, she was diagnosed with hemiplegic migraine – a rare disorder than can cause temporary paralysis on one side.
Today, Sarah explores the lead up to the diagnosis, her new symptoms, and how she manages to cope.
Six months ago, I was diagnosed with hemiplegic migraine (HM).
We've all heard of chronic migraine at this point (at least, I hope you have!), but hemiplegic migraine is a different kettle of fish. HM is a rarer form of migraine that can cause weakness on one side of the body.
My face suddenly drooped and I couldn’t talk
"Hemiplegia" literally means "half paralysis." During migraine attacks, I become paralysed on the left side of my body. The paralysis symptoms have been compared to what happens to the body during a stroke. For me, the sudden muscle weakness starts in my face. One moment, I'm battling with what I think is a regular migraine. The next, my mouth and eyebrow droop and I struggle to speak.
The first time this happened, I thought I was having a stroke. My normal voice turned to a slurred mumble, and I couldn't understand what was happening to me. I was aware of someone trying to talk to me, but I couldn't concentrate hard enough to make out the words. As for my brain, it had gone blank. There was no way for me to communicate what was going on.
It's the same every attack, and it's incredibly frustrating. My hemiplegic migraines usually last for up to two days.
Excess sleeping was a symptom of atypical hemiplegic migraine
After that horrifying first episode, it took multiple trips to the neurologist before I got a diagnosis. My HM symptoms were apparently atypical, despite having the signs such as:
- Tingling and numbness in my left side before the paralysis
- Visual disturbances
- Speech problems
One set of symptoms that set me apart from the norm was sleep-related. Every two days a week, I slept for 30+ hours at a time.
I would often wake up after a mammoth sleep feeling like I had no energy. I was dizzy, confused, had double vision and saw sparkles. Later, I realised these fizzling light flashes were aura symptoms before an oncoming migraine.
Sometimes, I had a migraine before going into a deep sleep, sometimes after, and sometimes not at all. This inconsistency was another reason the consultants took so long to diagnose me. As the headache migraine symptoms were only present occasionally, they had to rule out their presence being coincidental.
I had grown up with and around migraine, and I didn't know it could change - or certainly not as dramatically as mine had. It had completely taken over my life. For the last two years, I'd been controlled by it.
HM was different to any migraine attack I’d had before
HM was so different that I wouldn't have been able to recognise the cause if I'd tried. I've been chronically ill since I was a child, so managing various conditions was my normal. But this new diagnosis? I couldn't wrap my head around it.
Although my chronic migraine means I'll need a helping hand from others now and then, HM renders me helpless and unable to ask for assistance. The paralysis means I'm incapable of moving alone. I can't sit up in bed without help, go to the bathroom, or even make a phone call.
Tracking my migraine patterns and triggers
I decided to keep a diary to track these new migraines and see if I could find any patterns or triggers. I soon noticed that lack of sleep was a leading factor. I need at least eight hours (as we all do!) and interrupted sleep, stress, and overdoing it all can take their toll. A few months ago, I tried to get too much done at once. My pains rewarded me with two HM attacks in four days.
After I started treatment I didn’t have any attacks for eight days, but then they resurged, which filled me with a fresh wave of trepidation. Looking back, I see the eight days after treatment were filled with anxiety and multiple panic attacks, which led to the HM flares. Stress and anxiety always play a huge factor in how I cope, so I know overexertion will end badly.
But since anxiety can drive me into overexertion, so it can be a tough cycle to escape. I mustn't overwork myself, especially now that I have this new form of migraine.
Hemiplegic migraine is genetic – but it was still a shock to my family
I wrote about my experience growing up watching my mum struggling with migraines. Hemiplegic migraine can be a genetic condition - a form that runs through families - but I'm so happy to say she doesn't have it. She lives far from me at the moment, but she's been to visit me a few times.
Unfortunately, the first time she stayed, she saw me having an HM flare-up and burst into tears. She'd only seen me over video chat for the longest time, so it was a massive shock to see my HM in action.
But, despite it all, I'm happy to have received a diagnosis. I know what's going on, I can educate myself and my support circle, and I'm getting treatment. I still have flare-ups, but they're not as often as they were. I'm feeling more optimistic than I have in a long time.
The way I see it, the more I learn about hemiplegic migraine, the more I can reach out to and help others with the condition.
NPS-IE-NP-00475 August 2022