Tag Archives: familial hemiplegic migraine

Why Getting a Medical ID for Hemiplegic Migraine Depressed Me

“You’re getting a migraine, aren’t you?”said my physician last year during one of my regular visits. “If you were pulled over, a policeman would think you were drunk or on drugs. If you were taken to a hospital, they would think you were having a stroke. Time for you to get a medical ID bracelet.”

I was so shocked that I just sat there staring at him, and not just because he’d said I sounded impaired. I was first diagnosed with migraines at age five and have suffered from the throbbing head pain, vision changes, vomiting, and sensitivity to light, sounds, and smells all my life, as have many of the women in my family.

When I was 9, a doctor realized that I was having seizures when I had a migraine, though he did not give my headaches a different name. In my mid-thirties, a migraine specialist determined that I suffer not only from complex-complicated migraines but also from familial hemiplegic migraines, which are rare.

Hemiplegic migraines mimic strokes by causing temporary paralysis or numbness on one side of the body, loss of balance or coordination, and confusion or an inability to understand speech. Hemiplegic migraines can also cause speech difficulties such as slurring, dysphasia (words get mixed up or switched around in sentences), or aphasia (an inability to speak).

Most frightening, this type of migraine can cause changes in consciousness including seizures or coma. No one in my family who suffered from migraines ever carried anything other than pain medication, and though migraines with aura significantly increase the risk for stroke, no one in my family ever wore a medical alert. Now, however, medical ID bracelets are being recommended for people diagnosed with hemiplegic migraines since so few physicians are familiar with the symptoms.

Once I got over my initial shock at my doctor’s suggestion that I wear a medical ID bracelet, I welcomed the idea of the bracelet, if only because I thought I would feel safer wearing a medal with “Hemiplegic Migraines, Aphasia & Seizures” inscribed under my name and emergency contact numbers. To my surprise, I was terribly depressed upon receiving the bracelet. For months, I was so depressed that I found myself constantly “forgetting” to put the medical alert bracelet on. Because my doctor insisted I wear it, I had to figure out why the medical ID bracelet depressed me. This is what I came up with.

My medical condition was no longer private.

Many people describe migraines as an “invisible illness” because the suffering can’t be seen, and I suppose I felt more comfortable having a condition that most people didn’t know about. With the medical ID bracelet, instead of my life partner and close friends being the only ones who know I have migraines, everyone who sees me now knows something’s wrong with me. I’m wearing a bracelet that says so. Even though the bracelet is for my safety, it felt like an intrusion into my privacy.

I felt like a failure.

I take care of myself by getting plenty of sleep, avoiding dietary and situational triggers, and by walking, doing yoga, and meditating almost every day. I’ve tried every anti-depressant and anti-seizure medication on the market to get my migraines under control, but wearing a medical bracelet listing my condition made me feel as if I hadn’t done enough. The bracelet didn’t change the frequency or severity of my migraines, but it made me feel I have somehow failed to prevent them.

I felt like my migraines were my fault.

Migraines are neurological conditions, and researchers are still investigating whether all types of migraines may be inherited. Both sporadic (not inherited) and familial (inherited) hemiplegic migraines definitely involve genetic defects or mutations that upset neurochemicals in the brain, causing the symptoms of the aura and the pain of the migraine. Despite knowing all that on a conscious level, having to wear the medical ID bracelet made it somehow seem as if the migraines were my fault, which I had never felt before.

I felt like I was wearing a sign on my forehead.

I readily admit that I’ve had to make a lot of lifestyle changes and adjustments because of my migraines. I can’t go to concerts or movie theatres because the high volume triggers a migraine. I avoid grocery aisles with humming or flickering fluorescent lights that can instantly cause both a severe migraine and its associated seizures. I use only unscented lotions, soaps, or shampoos, nor can I be around anyone who’s wearing perfume because it causes migraines. I have to know every ingredient of every dish I eat that I don’t make myself to avoid food triggers like artificial sweeteners or additives (e.g., MSG): those things can cause migraines, and hemiplegic migraines can cause seizures which can lead to coma.

I’ve been called “neurotic” by more than one person in my life, including doctors who dismissed my symptoms as “all in my head” when they didn’t know anything about hemiplegic migraines. I guess I never minded being considered “neurotic” because I knew that I was taking care of myself. Though I’m unable to work when I have a migraine, I never considered myself to have a chronic illness let alone a disability. Wearing the medical ID bracelet made me feel like I was chronically ill as well as disabled. Further, the medical alert made me feel like I was wearing some shameful Disabled sign on my forehead for everyone to see.

To my surprise, my life partner was very pleased when I got the ID bracelet. He admitted, for the first time in almost 25 years together, that he has always been concerned about my having a migraine-induced seizure: he worried that he would be unable to adequately explain hemiplegic migraines to medical personnel. The instructors in my T’ai Chi and Kundalini Yoga classes looked so relieved when I showed them the bracelet that I felt quite guilty for not having gotten it sooner. When I went to a new dentist and then to an oral surgeon to have a dying tooth extracted, both doctors immediately asked about the medical alert and were then pleased to know that my medical condition, which neither had ever heard of before, was clearly indicated on the bracelet.

One day when I went to the grocery last month, I actually forgot to put my bracelet on. After I realized that I’d left it at home, I became anxious that I might experience an aura and have difficulty speaking while I was among strangers. That was when I understood that my initial depression over wearing the medical ID bracelet had completely disappeared.

After wearing my medical ID bracelet for almost a year, I can honestly say that I am happy to have it. I wear it every day, even at home, and have it on 24-hours a day when I have a migraine in case of seizure. I feel only safety wearing the medical alert bracelet now, and I encourage anyone who has a severe, chronic, or rare medical condition to wear one.

This article, in a slightly altered form, was first published
on  The Mighty and reprinted on MigraineMantras.

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Filed under health, hemiplegic migraines, migraine, migraine self-care, Migraine with Aura, Migraine Without Aura, migraines

This Is Your Brain on Migraine

Impacting not just the head but the entire body, migraine is the most common neurological disorder, affecting 10-15% of the adult population. For comparison, epilepsy is the fourth most common neurological disorder (after migraine, stroke, and Alzheimer’s disease). Unfortunately, few people completely understand the mechanism of migraine. Even doctors, neurologists, and scientists who specialize in migraine research do not necessarily understand everything about this disorder, if only because few of them have ever suffered its agonizing pain.

To make the process of migraine clearer for everyone, let’s imagine your body as a house run entirely by electricity. When the power supply works well and is uninterrupted, you have all the modern conveniences: light, heat, air-conditioning, refrigeration, computers, and Internet. The brain’s 100 billion nerve cells (neurons) are your body’s power system: its wiring and its electricity. Neurons enable you to breathe, move, and think. The neurons in the brain’s outermost layer — the cortex — process information from the senses, regulate body temperature, initiate movement, and enable such complex processes as memory, attention, speech, analytical thinking, and problem-solving. Electrical power makes your house and your body run more efficiently.

Now, imagine your house during an electrical brownout. Too little voltage, as in a dip, and lights noticeably dim, fans slow, and electronic devices sound a warning. Too much voltage, as in a surge, and appliances and electronics can be damaged. This is your brain during an aura. Cortical neurons fire abnormally, in dips and surges, causing symptoms which can include visual disturbances, nausea, clumsiness, or vertigo. Strange tastes, unusual smells, rapid fluctuations in body temperature, and speech difficulties are relatively common. The irregularities in your brain’s electrical system during an aura’s brownout can cause insomnia, depression, irritability, anxiety, brain-fog, and fatigue.

Of course, if you aren’t home during an electrical brownout, or if you’re asleep during an aura, you won’t notice the electrical havoc. Only 20-25% of those with migraines report aura, though some researchers suspect that migraine sufferers may not always notice aura symptoms or associate them with subsequent head pain. Some people with migraine may not associate fleeting irritability, occasional insomnia, or mild depression with an aura because, just as electrical brownouts are not always followed by a complete power outage, auras are not always followed by the crippling pain of a migraine.

Now, imagine your house during a complete power outage. Though the house is still standing, nothing in it that depends on electricity will work. That means no light, no washers and dryers, no television or computers. Without electricity, almost all modern conveniences are unavailable or inoperable. This is your brain on migraine. Instead of firing abnormally, in dips and surges, the cortical neurons across the brain begin to shut down completely. In a wave called Cortical Spreading Depression (CSD), the neurons in the brain’s cortex — the nerve cells that process sensory input, control movement, and enable both speech and thinking — go into “electrical silence” and don’t fire at all. It’s a power outage in your brain.

Why is this neural blackout in the brain so painful? Research indicates that migraine pain is likely due to inflammation of the trigeminal nerve — the largest nerve in the head — responsible for motor control, touch sensation, and pain perception in the scalp, face, eyes, nose, sinuses, cheeks, jaw, teeth, and gums. This inflammation of the trigeminal nerve appears to be directly triggered by the brain’s electrical blackout during Cortical Spreading Depression. When deliberately induced in the brain of a rat, a CSD neural blackout activated the pain-transmitting trigeminal nerve system in the meninges: the sensitive membranes covering the brain. Trigeminal nerve pain, as anyone who has ever experienced a migraine knows, is excruciating and debilitating.

Usually, after a blackout in a residential area, electrical power is restored, and life in your home returns to normal. Since people rarely die during power outages, they are usually not life-threatening. You don’t suffer physical pain during a power outage either, so it’s merely an inconvenience. This is where the analogy ends.

People with migraine suffer incapacitating pain during CSD’s neural blackout. Even after a migraine, when the neurons start firing relatively normally again, it’s highly probable that another wave of CSD and its associated pain will strike. Despite taking medication, effecting lifestyle changes, and avoiding as many triggers as possible, people with migraine cannot entirely eliminate the auras or the pain. Unlike the electrical system of a house, which can be upgraded to reduce brownouts and power outages, our brains cannot be upgraded to reduce abnormal neuron-firing, Cortical Spreading Depression, or CSD-triggered migraine pain.

There is some good news, however. In 2017, an international team of researchers discovered a “genetic particularity” that is more common in those who have migraine, with or without aura. This is the “first irrefutable genetic link” regarding the most frequent forms of migraine. Perhaps, one day soon, researchers will be able to determine ways to adjust and regulate the brain’s complex electrical system, reducing or even eliminating the neural brownouts that are thought to cause aura, as well as the CSD neural blackouts that trigger the incapacitating pain of migraines.

[Illustration of trigeminal nerve branches credit:
Trigeminal Nerve Branches, by John Charles Boileu Grant,
An Atlas of Anatomy, by Regions, 1962. Public Domain. Courtesy of Wikipedia]
(This article was originally published on MigraineMantras.)

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Filed under chronic pain, hemiplegic migraines, migraine, Migraine with Aura, Migraine Without Aura, migraines

What Is Hemiplegic Migraine?

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, instances of my words coming out jumbled and mixed up, or my losing consciousness without warning.

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.

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 often 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.

(This post is an excerpt of my post originally published on MigraineMantras.)

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Filed under health, hemiplegic migraines, migraine, Migraine Treatment, Migraine with Aura, Migraine Without Aura, migraines