Migraines Made Me
I have never known life without occasional severe headaches. “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 due to her own family history, and my dad’s.
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.
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 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.
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, due to its irresistible ease of use and efficacy.
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.
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 first tried Botox during clinical trials, and again after FDA approval. 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, and the same was true when I tried again 10 years later.
I married my partner in 2001 and got pregnant 3 years later. Some women have fewer migraines during pregnancy, and mine got significantly more severe. 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 daily use of rebound-causing pills was step two on my path to being chronic. By my second pregnancy in 2008, Imitrex was thought to be safe. Zo was born perfect as well. I give constantly give thanks every day for my daughters’ very existence, their health and the joy and purpose they bring me.
My migraines at that point only increased. I made a pilgrimage up to Michigan Headache & Neurological Institute, and learned nothing. I tried nerve block injections, returned to chiropractic care, tried lots of new medications… nothing. I was experiencing peri-menopause and having the worst menstrual migraines of my life, landing in the ER or being admitted every month during my period. Because my tubes were already tied and I had a history of endometriosis, we decided to pursue a ova/hysterectomy, which was done in 2011. My chronic migraines continued, but with far fewer ER / hospitalizations once my hormone replacement regimen was ironed out.
The wonderful doctor who recommended the hysterectomy had to quit practicing due to her own health problems. My next doctor gave up on me after carelessly prescribing a huge number of narcotics and benzodiazepines, which I had to come off of cold turkey. After that horrible experience, just this past January, I returned to my neurologist at UTMC and began seeing a pain therapist/ biofeedback practitioner who’s helped tremendously. I took a special chronic pain class and learned mindfulness, the Moving Easy Program (exercise for chronic pain sufferers), and distraction techniques. I was to take only Imitrex, and only treat two headaches per week, which I haven’t yet managed to do. It has been a difficult transition but I believe in my neurologist, Dr Gretchen Tietjen, and her staff.
If I didn’t have Migraine Disease, 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 perceptiveness.
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 Dr. Tietjen, 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 think I actually have true Cluster Headaches, but I might have an amalgam of migraine and cluster.
I don’t ever want to experience pain like I had last week again, but would I want to completely banish headaches from my existence; replace 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.
I do, however, work hard toward achieving a transition back to episodic; an improvement which would so increase my quality of life, and allow me to spend more time with my family. Until then, I will cherish every single pain-free moment. Thank you for reading. 🙂