What I Wish My ER Doctor Knew About My Migraines

The first time I experienced a migraine was just over 21 years ago, right after my first son was born. I was 18 and driving to work when I suddenly started to go blind. I was terrified. I pulled over and waited as the blindness expanded, my head started to feel like it was going to explode and every sound and light around me intensified. Cell phones were just invented and as a teenage mom, I certainly couldn’t afford that luxury. I couldn’t call for help.

Within the hour, my vision returned yet all other symptoms remained. Convinced I was dying, I went directly to my doctors office and my panic was enough for them to talk to me without an appointment. “You experienced Migraine with Aura,” was what I was told. I didn’t believe it. How could a “headache” cause all those symptoms? The worst news was that there was nothing they could give me because of my congenital heart condition and kidney disorder, which was later identified as a comorbid illnesses from Ehlers-Danlos syndrome.

I started to get migraines roughly once or twice monthly for a few years. Then they increased after the birth of my second son in 2002. Fifteen years later, I get migraines almost daily and sometimes twice a day.
I have tried everything that I was allowed to try. I receive message upon message from well-intentioned friends about all natural remedies that come across their Facebook feed – and I try them all! Everything advised is worth a try.

I’ve had three neurosurgeons, I currently have three neurologists, a migraine specialist, who incidentally found a small brain tumor. It turns out that tumor, 13 years old, is not responsible for my migraines. Go figure.

The local hospital jokes when I arrive that “my room is almost ready,” as a frequent flyer. I hate that. I know that if the day comes when I have a stroke, which I’m at a great risk for, that a migraine will be the diagnosis. You see, after day three with a migraine, I’m desperate. I’ve exhausted all home remedies that sometimes help but not always. Still, the hospital is a last resort.

Since being diagnosed with migraine with aura, I’ve also been diagnosed with complex and hemiplegic migraines, which mimic the symptoms of a stroke. That makes everything so much worse for not only me, but for the ER physicians, as they need to discern whether or not I need brain scans to rule out a stroke. The biggest problem with that is the fact that I’ve had so many scans done in my lifetime, and to date, they never want to “risk it” anymore. I get their position. I don’t want another scan either. This leaves me in a “the girl who cried wolf” position, although it’s not truly that type of situation. They are stuck. The neurologists don’t know how to help me anymore and I still haven’t figured out a good way to manage my migraines.

I woke up with one this morning, with the usual inability to move my jaw or leave my “migraine room.” Yes. I have a room dedicated to migraine recovery. It’s pitch black, has bottles of water, medication, a scarf to tie tightly around my head and a big enough bed for my husband to massage my head until I can walk and talk again — if I’m lucky enough that he’s home that day.

Today was one of those nightmare days where I got another migraine after dinner. It took five hours for my husband and me to get my head to a point where I could avoid a hospital trip. Despite what the ER staff and physician may think when they see me, I try everything in my power to avoid the crowded, loud, germ-infested nightmare of the hospital. I wish they knew that. I wish I didn’t get the look of, “Oh, here she is again,” or a feeling that they think I’m there for attention. Yes, I’ve been asked that before.

My veins are tired, I’m tired, and the very last place I want to be is in your ill-fitting “Johnny” and your hard bed, listening to the nurses joke around with each other while I’m impatiently waiting for help, as the throbbing of my head coincides perfectly with the second-hand on the clock.

I could easily write a series of books titled, “My Adventures in Migraine-land,” as there are too many tales of the last 20 plus, torturous years to fit into one article. I’m guessing it wouldn’t be anyone’s go-to selection of beach material.

As with any invisible illness, the biggest challenge is being taken seriously. Nobody can see my migraines or feel the pain. Every visit to the doctors and ER is done after I’ve exhausted all options. My diet is clean, I’ve had enough water, I’ve reduced stress as much as I can and I’m now desperate. I know you have people in your ER with heart-attacks and broken bones, and I certainly don’t want to be “the girl in room 202 with a headache.”