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5 things i wish you knew...

5 Things I Wish You Knew About My Migraines

It’s so much more than just a bad headache.

Mother and her two kids
A doctor sitting at a desk holding a model of a brain while explaining something to a person sitting across the desk.

Northwell Health Institute for Neurology and Neurosurgery

When you mention the movie “E.T.,” most people think of “Phone home.” But I think of migraines. I was watching the movie with my family when I had my first attack. One minute I was happily enjoying myself, and the next, I felt a blinding pain in my head. It was so excruciating that I huddled on the theater floor, squeezed my head and rocked back and forth.

As a child, I was “prone to headaches.” I was the kid who went to sleepaway camp with my own bottle of ibuprofen, but I wasn’t formally diagnosed with migraines until I was in law school. There, the stress, lack of sleep, irregular eating, and intense amounts of reading in dark libraries resulted in several bad episodes, including the time a friend found me in my apartment, clutching my head and repeating over and over, “Make it stop!” That was the day I received my official diagnosis of migraines, which are defined as disabling headaches, severe enough to markedly restrict or prohibit daily activity, that can be accompanied by nausea or light or sound sensitivity and are often characterized by a throbbing or pulsing sensation. They can last from several hours to several days.

It was not until I was pregnant with my older daughter, who is now almost 13, that I slipped into chronic daily migraines. At that time, I went to several neurologists who said there was nothing they could do because I was pregnant and migraine medications were contraindicated. (Today, most prophylactic anti-migraine treatments are still contraindicated in pregnancy, but a recent study found that the triptans—drugs like Imitrex taken to stop a headache that’s coming on—can be safe when you’re pregnant.)

Over the past 14 years, I have been under the care of some of the best neurologists in the country, and have tried virtually every treatment. Some worked for a bit, but none were long-term solutions. Most had side effects that made me question whether they were worth it.

Botox injections provide me with some relief and I am now trying a new class of drugs that target the calcitonin gene–related peptide (CGRP), which is believed to be involved in the inflammatory processes that cause migraines.

After almost 14 years, I think of migraines as my burden to bear, and I have learned to just live with them. I am not alone in this. The Migraine Research Foundation reports that approximately 4 million people in the U.S. are currently living with chronic migraines. Here are 5 things I wish more people understood about what it feels like to get migraine headaches:

1. It’s not just a headache

Possibly the worst thing you can say to someone who is having a migraine is, “Oh, I hate headaches! I get them too. You should take some Advil and relax!”

These are no mere headaches.

When someone experiences a full-blown migraine, the pain is excruciating. And it’s not just in your head. There is often nausea and vomiting. There may be acute sensitivity to light, sound, and touch. I experience migraine with aura, which means I often have visual disturbances—usually zig-zag lines in my vision that look like the wavering air over a highway on a hot summer day. Some people get auditory disturbances too, but usually I’m just extra sensitive to sound and smell. It often starts with horrible neck and shoulder pain. A very bad migraine can last for days, and even when the worst of the pain is over, there is a migraine “hangover” that can last for several more days—the head pain may be gone, but there can be deep fatigue and muscle aches. It’s like getting over the flu.

Before giving birth to my older daughter, I worried that maybe I had a low threshold for pain. Then I discovered that childbirth was a walk in the park compared to a full-blown migraine headache.

For me, living with chronic migraine pain also requires learning how to manage feelings of panic that are triggered when I experience early symptoms. Even if I do everything in my power to stave off an event, there is a very real possibility that a full-blown migraine may still hit, and, fun fact: Stress is a significant trigger for migraines.

2. It’s a complicated balancing act

Migraine is a complex condition and there are no standard solutions. Everyone who suffers from migraines has their own combination of triggers and symptoms, only some of which they can control. Some triggers are more potent than others, and avoiding a migraine involves a keen awareness of potential triggers.

My biggest trigger is the weather—extreme changes in barometric pressure, to be exact. Other triggers for me are hormonal changes, stress, smells and sounds, and certain foods like wine, anything with MSG, and foods containing nitrites like deli meats.

I am hyperaware of the weather, and when a storm front is coming, I need to be even more vigilant in ensuring that my other triggers don’t get activated. So I’ll be careful to manage stress, not skip meals, avoid trigger foods, and get plenty of sleep. If it’s a perfectly clear day, however, with no changes in barometric pressure, I can sometimes have the things that I won’t permit myself on potential trigger days such as a glass of wine.

3. I am very good at seeming “fine”

I read an article a few weeks ago about how people with chronic migraines—defined as having more than 15 migraines per month—actually report less migraine-related impairment than people with sporadic migraines. That makes sense to me, because I’ve been dealing with this for 14 years now and I’m in some form of pain virtually every day. I constantly push through my migraines because I have no alternative. I’m very good at seeming fine, and this can be confusing to people when I need to take a pause.

4. Managing migraines is like having another full-time job

I call it “the unwelcome 5th member of our family.” A lot of work goes into managing the symptoms and ensuring that I have as few migraine events as possible. There are regular doctor’s visits and now regular self-injections of the new CGRP medication that I give myself at home. I also need to plan for regular meals and rest, ensure that I never travel anywhere without my medicine and snacks, and make sure all social plans are made with an escape route just in case. When a full-blown migraine hits, it can go on for days, and so it is imperative for me to ensure I avoid it at all costs. I have learned to be attuned to my body, my environment and, while it is not always possible, I have learned how to generally avoid or minimize bad attacks.

5. My good friends understand I will sometimes have to cancel last minute

I often cannot commit to social plans. I am always conscious about how the plans I make will affect my head, and my ability to be present for my family and my job—which are my priorities. Often, this means I have to sacrifice some fun to ensure that I am whole for my obligations.

I try to be as transparent as possible about this with all of the people in my life. But sometimes friends don’t understand and think I’m trying to get out of things. I Iove being social, but some days I just can’t, and when making plans, I always need to keep in mind that I may have to cancel at the last minute (thank you, ticket insurance).

Now that my daughters are older—they’re almost 13 and 9—they are very aware of my migraines. They’re old enough to do things like fix small meals, get themselves ready for school in the morning, and manage their own homework, and when I retreat behind a closed door, they know they can’t disturb me unless it’s an emergency.

If there is a silver lining to my chronic migraines, I hope that it ultimately teaches my daughters about compassion for others, and resilience. One night my older daughter climbed into bed with me and said, “It’s not fair that you have migraines, you’re such a good person!” I told her that it doesn’t work that way. Everyone has their challenges, and this is mine. Over time I have learned more about my triggers and how they are affected by my environment and self-care, and have learned to use this knowledge for a better quality of life. I’m hopeful that new treatments will continue to be studied so I, and others like me, won’t have to suffer.

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Published April 30th, 2019
A doctor sitting at a desk holding a model of a brain while explaining something to a person sitting across the desk.

Northwell Health Institute for Neurology and Neurosurgery