What it’s Like to Live with Hemiplegic Migraine

By Alexandria & Wanda

Our Stories

Alexandria:

The smell of smoke woke me in the middle of the night. I got out of bed fast, prepared to evacuate my apartment. I heard people talking and assumed that others were already leaving the building. When I got to the hallway, however, it was empty: there was no smoke, and there were no people.

Cautiously, I went to the floors above and below mine, where I could still smell something burning and hear the hum of voices. I went to the parking lot, thinking people were congregating outside. No one was around, and all the apartments in the building were dark. I went back to my place, firmly convinced that there was an electrical fire in one of my outlets.

After an hour of crawling around smelling each outlet, I was more confused than ever. No smell seemed to be coming directly from any of the outlets, yet when I stood back up, I could most definitely smell electrical fire. I could still hear people talking, too, though no one seemed to be close enough for me to hear them clearly: I couldn’t make out the actual words of the conversation. I was up most of the night, crying and waiting for disaster to strike. The next day, when I smelled gasoline and still heard several voices faintly talking to each other, despite my being at home alone all day, I thought I was losing my mind.

Gasoline, cigarette smoke, electrical fire, propane gas – I’ve smelled all of them for no reason in my life, and it took years before I was brave enough to admit it to anyone. Even then, I only told my doctor because I was also experiencing such dreadful tingling and weakness in my left hand that I kept dropping things, and because my left foot was numb so often that I limped and stumbled along, unable to feel my foot.

When I finally admitted smelling strange, non-existent odors, along with hearing “voices” without understanding the words, my doctor began to question me about other possible symptoms. She mentioned strange tastes, temporary mental confusion, an infrequent inability to speak, my words coming out jumbled and mixed up, or my losing consciousness.

I’d been having non-convulsive seizures during the migraine attacks at least since the age of 9, when a doctor noticed that I sometimes lost consciousness during migraine. Because I was diagnosed with migraine at age 5, and because virtually all the women in my family also had migraine, the doctor said she thought she knew what was causing all those frightening neurological symptoms.

After sending me for multiple medical tests to ensure that I was not developing multiple sclerosis and that I had not had a stroke, the doctor diagnosed Familial Hemiplegic Migraine, a rare form of migraine disorder.


Wanda:

We were coming home from vacation, driving across Virginia, the first time it happened. I thought perhaps it was just the remnants of the last migraine combined with the drive through the mountains. When it became a struggle to keep driving – literally to go in a straight line – we stopped for the night. They asked at the front desk if I was okay, and my daughter responded, “she has a migraine.”

Ruth was right, but the reality of the situation was much scarier. Come morning we were back on the road, headed to a neurologist appointment for Ruth who was being checked out for a non-migraine problem.

See, I’m the only one in my family with migraines. No sooner had Ruth checked herself in, when I was swarmed with nurses, the PA, and finally the doctor. They were convinced I had had a stroke, and they weren’t far off. What I was experiencing is called a Sporadic Hemiplegic Migraine. Just when you think migraines can’t get worse, they do.

Since strokes run in my family, I got to spend six lovely days in the Stroke Unit at Carilion’s Roanoke Memorial Hospital. It’s not a vacation spot worth recommending.

The first three days were spent stabilizing me and determining I had NOT had a stroke. The next two were weekend days, so not much happened aside from lots of blood work, a chemical stress test, and a couple visits from nurses on the “other side” of the neuro ward where my DHE treatments were done. They brought treats!

That Monday, I met with my neurologist and the head of the department. They told me about SHMs, explained that an MRI was needed to be sure there was no brain damage (Ruth said they’d be lucky to find a brain), and that I was being sent home to rest. Yeah, right. Single mom, teenager, just back from vacation, and they expected rest?!

The MRI was done the following week, and showed Dawson’s Lesions (they look like God’s finger painting on my brain) which could have been caused by the SHM, or could cause the SHM. No one knows for sure.

Aside from rest, there is no treatment for SHM, nor is there a preventative. Life goes on… I refuse to let SHM get in the way of life. My diet has changed, especially since Daddy survived his hemiplegic stroke, and we monitor my speech and motor skills after each SHM.

There are schools of thought that link migraines with a higher probability of stroke, and tell us SHM increases our risks even more, just as having strokes run in the family does. I’m only 48, and Daddy is 80 and still works full time POST-stroke. I have a ways to go before allowing SHMs to slow me down!


What are Familial & Sporadic Hemiplegic Migraine?

Hemiplegic Migraine (HM) is caused by mutations in one of at least 4 genes, preventing the neurons from firing normally, causing partial numbness, tingling, or paralysis on one side of the body (hemiparesis) along with the other migraine aura symptoms such as visual disturbances or speech difficulties. HM can also cause impaired consciousness, ranging from confusion to profound coma. Familial HM is inherited: other family members with migraine have similar neurological symptoms. Though Sporadic HM can occur after head trauma, and though he same genetic mutations are involved, Sporadic HM is not inherited, so it does not run in families.

The pronounced neurological symptoms of Hemiplegic Migraine make it a subdivision of Migraine with Aura, which can cause heightened sensitivity to smells and to light, as well as nausea and vomiting during the migraine itself. Although the debilitating pain of migraine does not always follow the aura symptoms of light sensitivity or nausea in other forms of migraine, virtually everyone who experiences the one-sided neurological symptoms of Hemiplegic Migraine, whether familial or sporadic, has the excruciating one-sided head pain after the aura.

Though it’s uncommon for the neurological symptoms to remain after the pain of the migraine has passed, HM can cause prolonged weakness, extended memory problems, or mild but permanent difficulties with movement and coordination. A few doctors and researchers seem to believe that Hemiplegic Migraine “disappears” after age 50, but most people do not get miraculous relief from these migraine attacks as they age. Unfortunately, triptans and ergotamines, which are sometimes used to prevent or treat other forms of migraine, are contraindicated in those with Hemiplegic Migraine because those prophylactic medications trigger strokes.

Despite the worrying symptoms, a diagnosis of Hemiplegic Migraine can actually be a relief for migraine sufferers. Their strange neurological symptoms are part of a rare migraine disorder that not only has a name, but is a recognized illness and disability.


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