Shedding Light on Hemiplegic Migraine Disease
Last updated: March 2022
Picture yourself in line at the grocery store perusing the magazine rack. One moment you're completely fine, looking over the latest covers, but as you go to move the cart forward, you lose feeling in your right arm. Suddenly half of your vision goes out. You can barely see the cashier waving you forward. You try to speak, but the words that come out aren't words at all. As they call for help and dial 9-1-1, you try to tell them you're having a hemiplegic migraine attack, but all they see are symptoms of a stroke.
"Losing the feeling all down one side for a few days, yet in terrible pain on one side of your head, back of [your] eye, and neck, and not being able to focus visually, not being able to speak properly, and slurring words, and loss of memory… it's crippling," says Karen.
Hemiplegic Migraine Awareness Day
June 16th is Hemiplegic Migraine Awareness Day, and we're shedding light on this rare form of migraine disease that causes unspeakable pain and damage to your mind, body, and spirit. These attacks are terrifying to witness, let alone experience. People living with hemiplegic migraine disease face many trials, which often start with getting loved ones and medical professionals to believe in their pain. Well-meaning phrases are often more hurtful than helpful when dealing with a genuine, disabling condition. One can't simply walk it off or "fix it" by drinking more water.
What is a hemiplegic migraine like?
"When I say that I have stroke-like symptoms unless you also have hemiplegic migraines, you don't 'know exactly how it feels,'" says Grace. "One of my worst hemiplegic migraines, I was in bed for 22 straight hours, couldn't turn over, lift my head off the pillow — for sure wasn't drinking water. Until you experience that, you don't 'know exactly what that's like.' And no, Tylenol doesn't help."
Hemiplegic migraine disease steals from every area of your life, from work to social and family arenas. Sometimes, you're too sick even to call in sick. It's frightening to experience, especially the first time when you think you might die. The unpredictable nature leaves some afraid to leave the house or be alone while others wear a medical ID bracelet in case of attacks in public.
What is hemiplegic migraine disease?
Hemiplegic migraine attacks come with an aura like other migraine types and include motor symptoms, specifically one-sided motor weakness, which can cause vision, speech, and sensory impairments. Unilateral weakness is one of the most crucial aspects of hemiplegic migraine disease diagnosis. The condition can be sporadic or develop in someone with no family history of migraine disease.
Symptoms of hemiplegic migraine disease
Some of the common symptoms of hemiplegic migraine disease include:
- Vision loss, blind spots, or other visual disturbances
- Numbness and tingling
- Partial or complete loss of control over your body movements
- Lethargy (weakness or sleepiness)
- In severe cases, coma or brain damage may occur
The severe head pain and motor weakness of hemiplegic migraine attacks can last anywhere from hours to days (even weeks in some cases) and may switch sides. Though the issues with body movement and sensations often outlast the head pain, they are typically the first sign of an impending attack, with the "headache" coming on within 30 minutes of the aura.
While migraine disease affects one in five people, hemiplegic migraine is closer to one in a thousand. In addition, women are more likely to have this neurological condition that arises in the early teenage years (12-17) on average.
Hemiplegic migraine treatments
Treatment can be tricky, like most headache disorders. Abortive or rescue medications and preventive therapies are key to improving hemiplegic migraine attacks and restoring quality of life. Some typical migraine disease options, such as triptans, ergotamines, and beta-blockers, aren't recommended. Specialists are concerned about these drugs constricting blood flow in the brain in patients with hemiplegic migraine disease. However, ketamine, lamotrigine, verapamil, flunarizine, and acetazolamide can be effective preventive treatments along with nasal ketamine as an abortive.
It's not "just a headache"
One of the biggest struggles people with hemiplegic migraine disease experience is getting those around them to understand that it's not just a headache. And also, it's not just head pain. The symptoms of the disease can last weeks after the initial pain has subsided. It takes a warrior to survive these attacks. Hemiplegic Migraine Awareness Day is about sharing the hard truths about this condition and how much it takes from those who live it.
"I wish people could SEE all the ways hemiplegic migraines screw me up," says Sarah. "It's not just the intense blinding, numbing, never-ending pain. It's the ocular disturbances. It's teeth and jaw and ear pain. It's legitimately having a stroke without actually having a stroke because my left arm, fingers, and legs go numb or are so weak and dead feeling it's scary. It's not being able to spell my name or remember how to write the number '5.' It's hard to breathe or even want to keep breathing. It's EVERYTHING I can do to get out of bed."
In the past year, has insurance made it difficult to get your migraine treatment?