5 Things I’ve Learned From Living With a Rare Neurological Condition

Patient Expert

The first time I experienced a sporadic hemiplegic migraine (SHM) attack, I was unaware and unprepared. I had periodically suffered migraines with auras since I was a teenager, but I had never previously had such a powerful and debilitating attack that involved temporary paralysis, profound confusion, and impaired speech. As SHM symptoms can mimic a stroke, it was a terrifying and paralyzing experience that landed me in an emergency room with some distressing symptoms and a lot of questions.

The emergency room doctor gave me a diagnosis that day and recommended I reduce the stress in my life. But I didn’t listen. I thought the attack was a fluke and I just wanted to get on with my life. I didn’t want to accept anything that might slow me down or make me appear weak, so I pushed the diagnosis aside and carried on.

But, as I discovered, SHM doesn’t simply disappear if you ignore it. There is no cure, and treatment options are limited and controversial. So the only way to manage it is prevention. As they say, the first step to solving a problem is recognizing there is one. It was impossible to prevent attacks when I had not fully accepted my diagnosis. It was only recently — after several more years and subsequent SHM attacks — that I finally realized that no amount of denial could eliminate my condition.

Now that I have a better understanding of SHM, I am able to also appreciate what I’ve learned along the way. Here are five things I’ve learned from living with a rare neurological condition:

1. Listen to your body

For most of my life, my mind and body have been at odds. My mind always insisted on going faster and doing more. Meanwhile, my body was trying to send out subtle warning messages in the form of minor headaches and even hives. My body was telling me: drink water, stress less, sleep more. But my mind dismissed these messages.

SHM isn’t subtle; a migraine attack is an electrical storm in the brain. Living with SHM has helped me to realize that I need to listen to my body and give it the rest, water, food, and anything else it needs before it’s too late. I don’t need to keep up or prove anything to anyone else; I need to prioritize my health, quiet my mind, and listen to the messages my body sends.

2. Slow down

This was doctor’s orders from the moment I was diagnosed, but I wasn’t ready to hear it. I come from a family full of workaholics and perfectionists, so slowing down does not come naturally. Most days, I have one speed: full throttle. It requires conscious effort to take breaks, set boundaries, say no, and slow down.

SHM symptoms tend to pop up when I am run down. They are a reminder — though often too late — that I am overdue for a break. I now make more deliberate effort to schedule time away from my work, build rest breaks into my travels, and say no to projects, people, and activities that are draining.

3. Speak up

Like many women, I was raised to be polite and not make a fuss. I was also discouraged from showing or expressing pain. When you are trained to prioritize other people’s comfort and expectations over yourself, it becomes second nature to ignore your own needs. In order to prevent SHM attacks, I need to stay hydrated, fed, and rested. This means that sometimes — even in the middle of meetings, interviews, or out on a tour when it might be unnatural for me and inconvenient for others — I have to speak up and excuse myself, or sit quietly and risk an attack.

4. Be prepared

Despite working in travel for nearly a decade planning other people’s international trips down to the most minute day-to-day details, I am not one to plan far ahead in my own life. I like the freedom to fly by the seat of my pants and wander where the wind takes me. But as an SHM sufferer, if I am not prepared, the wind is likely to take me right back to the hospital.

Although it goes against my adventurous nature, SHM has taught me to be more prepared. I have to ensure I will have enough water, food, and rest no matter where I wander. So whether I am going on a hike in my neighborhood or flying to the other side of the world, I now try to plan ahead. This often involves packing snacks, carrying extra water, allocating enough time for rest, wearing my medical alert bracelet, sending my itinerary to my family, explaining to travel companions what to do if I have an SHM attack, and collecting details of activities to determine if they are safe for an SHM sufferer.

5. Realize that things are not always what they seem

I’m naturally an empathetic person, but living with SHM has made me even more aware of the fact that many people suffer with diseases and pain that we cannot always see from the outside.

If you met me, you would never guess that, on occasion, I experience stroke-like symptoms. You’d never know that I need to get sufficient rest and keep constantly hydrated or I could end up with an electrical storm in my brain, numbness in my face and half my body, unable to speak. My tolerance for dehydration, hunger, and exhaustion is likely lower than many other people my age.

I am still fairly young, active, adventurous, and outgoing. I don’t think this is how most people imagine a person with stroke-like symptoms to appear. But what happens on the inside of my body may not always match what people see on the outside. Some days I feel perfectly fine. Other days, I am completely wiped out, but I will still try to show up with a smile on my face. Living with SHM has taught me that things are not always as they seem on the surface, and we should treat each other with compassion. Just because we can’t see a storm brewing behind someone’s smile, doesn’t mean it isn’t there.

See more helpful articles:

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How to Avoid a Trip to the ER With Migraine