My Migraine Journey

My Migraine Journey

mighty with migraine

{ #mightywithmigraine started on Instagram by @mindfulmigraine and @the_migraine_life }

June is Migraine Awareness Month. As someone whose life has been affected by chronic migraines in the worst way, migraine awareness is important to me year-round. But, I thought now would be a good time to share my own journey with migraines. Reading the stories of others who have experienced similar things often helps me, so I hope that maybe this can help you.

I had my first migraine when I was twelve. I had been sick with a bad viral illness, and my doctor thought that my migraine was perhaps caused by that. If only that had been the case. Instead, the migraines kept coming. I went to see a neurologist who diagnosed me and began treating me. That was the problem, though. I couldn’t really be treated. None of the medications he prescribed helped me. Or, in some cases, they caused such bad side effects that I was unable to continue taking them.

A few years after my initial migraine diagnosis, my neurologist noticed that my heart rate was a bit high. He decided to take orthostatic blood pressure readings, meaning I would have my blood pressure taken while lying down and then several times while standing up, with about ten minutes between each pressure. This showed that my heart rate increased upon standing, and even more the longer I stood up. He began talking to me about dysautonomia, and I later saw a cardiologist who diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS).

According to the Cleveland Clinic, “Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response).”

POTS and migraines often go hand-in-hand. Many POTS patients report having migraines as well. As I’ve gotten older, my POTS symptoms have worsened. Simultaneously, my migraines have gotten worse as well.

Now, I have a constant headache. About two or three times a week, this headache intensifies to a full-blown migraine. Sometimes one of my migraines will last for a day or two, sometimes longer. I once had a continuous migraine that lasted for over a month. When a migraine goes on for more than seventy-two hours, my neurologist typically tries to treat it with steroids. If that doesn’t work, I go to the hospital for an IV infusion of multiple medications. This tends to provide some relief after a day or so.

I am not currently on effective treatment for my migraines. I am not exaggerating when I say I have tried every medication typically used for migraines. None of them have helped me. My abortive medicine that I take when I feel one coming on does not help. I have tried Botox, dry needling, and acupuncture to no avail. Recently, the FDA approved several new medications that all work in a similar way and are administered via injection once a month. They are the first true migraine medications (whereas other medicine used in migraine treatment is often anti-seizure, anti-depressant, etc.). I tried the first of the approved medications, Aimovig, for nine months. I only noticed minimal improvement during month two. Other than that, I experienced flu-like symptoms for a few days after the injection, among other side effects.

I think when people hear the word “migraine” they just think it’s a typical headache. They don’t think it’s a big deal. But chronic migraines have taken over my life. I spend most of my time in a dark room. A lot of time in bed. It can be hard to look at a screen or read sometimes, but I do it anyways, because if I stopped doing everything when I had a migraine, I would never do anything. If you talk to me on any given day, no matter how I look, I’m probably experiencing some kind of head pain.

I feel proud of myself for all that I do in spite of my migraines. I’ve gotten a college degree and I’m working on another. I’ve found things that I love to do that I can do when I’m not feeling great. I’ve found things that inspire me and help me keep going, even when it’s hard. I haven’t let migraines stop me, no matter how hard they try. I truly am mighty with migraine.