Don't Dismiss Those Migraine Symptoms

Migraine is a common comorbidity with endometriosis. In fact, a 2021 National Institutes of Health study shows that nearly thirty percent of women with endometriosis (The study only included cisgender women, as far as I can tell.) also have migraine, and that folks with migraine are 4.6 times more likely to have severe endometriosis.¹

For decades, I thought I just had really bad headaches (kinda like when someone says endo is just really bad cramps). Eventually, (mainly because my mom has migraine) I started calling my truly horrible headaches migraine headaches because they were debilitating. And I didn’t seek out a doctor; I just tried to push through them.

Migraine is more than headaches

Now I understand that believing the headache symptom of migraine is the entirety of the disease is incorrect; migraine is actually a full-body disease. It can affect your bladder, joints, brain, gastrointestinal tract, sinuses, and ears, and cause a wide range of symptoms. Migraine has four phases: the prodrome, the aura, the headache, and the postdrome. Long before the headache symptoms arrive, people go through other symptoms that can signal the attack is coming. This is called the prodrome.

My signs are dropping things frequently, my skin feeling extra sensitive (when it hurts for my bare arms to touch things, I know a headache is coming), my eyes drooping, and severe fatigue. Before diagnosis, I didn’t put these things together. I thought they were merely things that happened to me now and then.

Doctors downplayed my migraine symptoms

I’m thankful that I finally pushed to get a neurology appointment in 2021 (and, as these things go, I didn’t see a neurologist until 2022). However, I’d talked about my headaches with many practitioners. Most recommended NSAIDs and rest, and sent me on my way. They didn’t bother to ask if I developed sensitivity to light and sound before my headaches (yes), or if I had tracked what generally triggers my headaches (Dehydration is my top trigger, followed closely by exposure to strong chemicals or fragrances.).

I have known for at least twenty-five years that perfumes, colognes, laundry detergents, fabric softeners, and any kind of fragrance plug-in or spray makes me feel horrid within minutes. But when I would share that with my doctors, they would tell me to avoid those things if I could and didn’t offer any other solutions.

Endo pain distracted me from migraine diagnosis

It wasn’t until I filled out an extensive questionnaire for the neurologist that I began to realize how seriously my symptoms affected me. Before seeing her, I didn’t know that I was having up to thirteen headache days a month, that I had a large handful of prodrome symptoms, and that, by definition, migraine was a disabling condition for me. I’d been limping along for years trying to manage while suffering quite a lot. But, at the time, my pelvic pain and loss of mobility figured larger in my world than the headaches.

I didn’t know I could feel this good

Within the first five minutes of my appointment with the neurologist, I had a diagnosis. She told me she was shocked no one had ever put the pieces together and she didn’t know how I was managing life with such debilitating symptoms. Her surprise gave me pause. I had no idea how much better I could have felt all those years if my condition had been diagnosed earlier.

She prescribed a triptan, which was too intense for me the first time I tried it; I popped it and fell asleep fifteen minutes later. I am not a napper. So, I didn’t try the triptan again. But she also recommended a regimen of magnesium that radically reduced my attacks. Last March, I had thirteen migraine attacks, but now I have only one or two a month. I don’t lose work because of attacks. I am able to keep many more appointments, and as long as I keep my hydration in check, I can be guaranteed long stretches without attacks. My main struggle now is remembering to drink electrolytes and take my electrolyte supplements. I’m certain if I can build those habits, I’ll have some months without an attack.

Awareness is key

See your PCP or a neurologist if you suspect you have migraine. Read up on all the symptoms and the different ways migraine auras present. If you see yourself in even a fraction of the symptoms, talk to someone. There are an abundance of migraine medicines on the market, as well as a variety of products to help manage the symptoms, and you might well have an experience like mine where, once you’ve gotten a diagnosis, you’ll be able to get some of your life back.