I Don’t Care What They Say, I Can’t Stay In A World Without Headache

When I was in sixth grade, and leaving school again in tears with a relentlessly pounding head, my gorilla-like teacher followed me out into the hallway. “You won’t be able to get away with these… headaches… in junior high, Liz,” he spat scornfully. I blinked at him in disbelief, turned, and ran. I was stuck with the nickname “Liz” all the way through high school, but as soon as I escaped to college I never let anyone call me that again. The migraines, though, did continue. And continue. And continue.

I have never known life without occasional severe pain. “Occasional” meaning once per week, twice per week, sometimes every day. Mom says that at two, I was banging my head on the floor and crying, and she knew what was going on in my little brain. She and her parents both had migraines, her father most severely; my dad and his dad also suffered. My paternal grandfather was actually trepanned – had a hole drilled in his head to “release the pressure.” It didn’t work. Just like, throughout my life, nothing would work for me.

Periactin, Verapamil, Inderal, chiropractic care, talk therapy, biofeedback, hypnosis…

I was diagnosed officially at 9, and given my first Fiorinal prescription. It was 1982, before Reye’s Syndrome, before rebound headache research had reached family doctors. I learned very early to take a pill to stop the pain, and that the side effect of that double green capsule was a little surge of happiness. My brain, still developing, formed around that connection.

Cafergot, Midrin, codeine, Prozac, Elavil, pressure points, massage…

In high school I was hospitalized for the first time for IV DHE therapy by my neurologist. From that point on, I would need hospitalization every year or so, until I went chronic in 2009, and then it became several times per year. My very cool family doctor stopped by one of those times, maybe my senior year, and whispered in my ear the magic word, research he’d been following: Sumatriptan.  However, that mythical, magical new option was still years away. My neurologist told me around then as well that he was going to prescribe a controversial preventative that I absolutely could NOT stay on, but would get me through my rough patch. He said, “You’re going to hate me for taking you off of it, but I will have to, it’s not safe.” It was called Sansert, methysergide, a molecular cousin to LSD. It could cause heart problems. He was right, I did hate him for taking me off of it, because it gave me many pain free days, more in a row than I’d experienced in years. I left him and went to someone who would let me keep it. That journey led me to the hospital where my current neurologist practices, teaches, and researches, but first I had a wonderful student resident, whom I adored. She did let me stay on Sansert. I was on it, with regular breaks for safety reasons, until I decided to try to get pregnant.

Depakote, Neurontin, acupunture, magnesium, B2, feverfew…

Sumatriptan.

My sophomore year in college, Sumatriptan tablets were approved in Canada. That same family doctor who whispered the magic word in my ear sent us to Canada to obtain the miracle remedy said to be able to stop a migraine in its tracks: the nausea, the phono/photophobia, the pain. All of it. The first time I took one was the morning of Lollapalooza ’92, where I was heading with my friends. In tears, thinking I would have to miss the huge event I had traveled for, I swallowed the little lozenge and stepped into the shower. Under the stream of water, my brain went calm and tears leaked from my eyes. I had never felt anything like it. I went to the show that day and had one of the best times of my life, thanks to Sumatriptan.

Sumatriptan was my first step toward becoming chronic.

When the injections were approved by the FDA, I fearfully learned to use them.  Piece of cake. SelfDose Unit, band-aids, my thighs were always peppered with bruises.

Maxalt, Zomig, Amerge, Frova. Effexor. Lamictal. Prednisone. Topamax.

I had to leave my beloved hilly university two years later to finish college in my home town, living again with my parents. It took me almost six years to get my degree. I had no idea what I wanted to do, knew I might have trouble with a real career given how many days per month I would be spending in a dark room. I worked at a clothing store, and stayed in customer service, always. I had jobs at a video store, managed a coffee shop, a bookstore, then worked for my hometown’s Parks & Recreation Department.

I had a long, unhealthy on and off relationship for years, and then when it was finally over I met my current partner when he was hired at the coffee shop. He was a senior in high school. I was twenty five. That coffee shop gave me a life, an identity, and I finally felt at home in my skin, which was becoming more and more decorated with tattoos, a road map of my life; needles not being scary since I used them on myself all the time. Pain which would create something lasting and beautiful.

DHE, Xanax, Ativan. Fioricet-3, Percocet, Vicodin, Phenergan…

Botox, during clinical trials. The first treatment gave me some amazing pain-free time, so much I didn’t know what to do with myself and got depressed. It worked less well each consecutive administration until the money my parents were paying became ridiculous.

We got married. I got pregnant. Some women have fewer migraines during pregnancy, and mine got significantly more severe. Of course they did. In 2004, no one was ready to prescribe Imitrex during pregnancy, so I took a lot of narcotics, which were surprisingly the safest drugs to use. I had to. I was in constant, never-ending, severe pain. Violently sick all the time. My midwives and doctors assured me that the narcotics were safer for my baby than the pain would be. And they were right. X was born perfect. But that was step two on my path to every day pain. By my second pregnancy in 2008, Imitrex was judged to be safe. Zo was born perfect as well, the placenta previa and early c-section having nothing to do with migraine or use of medications.

Migraine brains are said to be extra sensitive. Sensitive to weather changes, certain smells, certain foods, changes in sleep patterns, to alcohol, to emotion. I have always been a sensitive personality type too, prone to taking things too seriously, becoming easily depressed. But I am also extremely kind, almost hyper-aware of others’ feelings, nearly able to read minds just by looking into peoples’ eyes.

Nerve block injections, Zoloft, butterbur, CoQ10, tiger balm, peppermint, eucalyptus…

If Migraine Disease and Headache Disorders were removed from the world? I suppose with my love of reading and my writing skill, maybe I would be a college professor. A published author? Would I have had better grades, gone to a better college, on to grad school? I wouldn’t have worked at the coffee shop, wouldn’t have met my husband or have my two amazing and glorious daughters, one a young humanitarian, the other already a warrior (and thankfully both headache free at 5 and 9). I wouldn’t have met all of the wonderful friends I’ve had throughout my life. I wouldn’t have my sensitive personality, probably, or my perception, or even my kindness, the quality that seems to draw people to me for reasons I’ve never understood, since with my migraines, I’ve never been able to accomplish much.

Over the last year, my headaches have changed in character. I had to quit my job with Parks & Recreation because my illness, parenting, and working full time became too difficult. I applied for disability, put my writing skills to use and was approved immediately. Since then I have developed allodynia, occasional ice pick headaches, and more sinus issues, with eye-tearing and stuffiness. Finally, just last week, I had a migraine which was so severe I could not lie down and go to that still, quiet place within myself. I had to move. I had to kick, and scream, and bang my head on things. I know now that the Cluster Headache community calls that “dancing.”

In the ER, I was given fast flowing pure oxygen, but in a rebreather mask. It worked, but they wouldn’t let me have any more so the pain began to increase again. In reporting that to my neurologist, I was able to have oxygen prescribed to use at home, in a non-rebreather mask so I can use it whenever I need to. I don’t know whether this will revolutionize my migraine treatment plan, but it might. I don’t know whether I actually have true Cluster Headaches, but I might.

Periactin, again. Cymbalta. Oxygen, D3, Omega 3s, Zanaflex, Benadryl, Drammamine, Dilaudid…

I don’t ever want to experience pain like I had last week again, but would I want to live in a world without headaches, in a world without my sensitive brain, my husband, my children, my very life ?  NO.  Migraines made me. Migraines are part of who I am. And I would not trade this life for any other life.

Not even a life without headache.

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