49 Years Later

Last updated: July 2022

Editor's Note: Content warning - This story contains experiences with self-harm.

My life as a migraineur started when I was 8 years old. Our family doctor was convinced I was an attention-seeking, overly dramatic child. He prescribed Fiorinal and sent me on my way. Fortunately, the migraine episodes were few and far between then. It wasn't until I was 16 that the condition really presented itself in a very attention-grabbing fashion.

A diagnosis after a crisis

While watching television with my older brother one evening, I noticed the zigzagging lines and flashbulb pops in my vision. I started up the stairs to get my medication when the pain kicked in. By the time I reached the top of the stairs, I was completely blind in both eyes and in full freak-out mode.

I was, of course, nearly hysterical with pain and fear. My parents raced me to the emergency room, I was even treated to a police escort after a local officer pulled my dad over for speeding. At the hospital, I was put through all the requisite testing available at the time. I answered a million questions in between bouts of ferocious, projectile vomiting.

Finally, the nurse came in with a hypodermic filled with the answer to my prayers; I don't remember exactly what they gave me, only that it burned like fire while I could feel the head pain receding simultaneously. My vision had returned shortly after the first dose and round two knocked the pain right out of the stratosphere. The doctor explained to my frantic parents that I was suffering from migraine and the blindness, while scary, was not uncommon and completely transient. I went home in an opiate haze that lasted about three days.

Clinic of hope

The good ol' family doc we'd been using was obviously not impressed with the ER doctors' diagnostic abilities; he was still convinced I was attention starved and pathologically needy, but he did finally agree to make a referral as there was a new clinic in Ann Arbor that specialized in migraine treatment. My dad was told there would likely be nothing new discovered but he was willing to make the referral if they were willing to travel the two and a half hours to the clinic.

Thus began the journey. After the first appointment, I felt vindicated by the diagnosis of classical migraine with aura. Within two weeks of that initial appointment, I was at the first in-patient migraine program in the United States in a tiny little community hospital in Chelsea, Michigan. My diet was restricted, my sleep and eating patterns documented and many, many medications were trialed and then deleted from the list of possible effective treatments. I went home 12 days later with a fistful of prescriptions and a brand new tool belt filled with everything I needed to live a normal life... or so I thought.

Migraine management is not manageable in high school

It didn't take long to find out that biofeedback was almost impossible to do in the high school library and that none of the "lunch ladies" gave a hoot in hell about my dietary needs. I realized I had a bigger job on my hands than explaining what I needed and why and that no one was as understanding or sympathetic as I had been led to believe.

My medication schedule was a nightmare and constantly changing as meds were phased out due to side effects or lack of efficacy. I passed out on several occasions getting up from my desk after classes because my blood pressure was too low and I knew I couldn’t deal with much more of the teasing and flat-out ridicule from my classmates.

It took only four years before I found myself back in the comfortable, migraine-friendly environment of that little community hospital. Of course, there had been new advances in treatments; pharmaceutical and behavioral. I tried them all. And after that, I had a five-year break from the inpatient program before I was readmitted for round three.

The ever-present migraine problem

In my mid-twenties I finished college, started and stopped several jobs, moved several times, and was going about the business of life with tepid enthusiasm. College had taken longer than the original four years I'd planned... due to migraine. Every job I started I lost eventually... due to migraine. The migraine problem had even driven a wedge between my brother and me; since he couldn't lay eyes on this awful condition, he had concluded that I was just lazy.

The fountain of empathy from other family members had dried up as well. The only constant support I found was my dad; his unending devotion to my well-being and his unconditional love for me sustained me through many years of medication trials, emergency room visits, trips to Ann Arbor, broken hearted phone calls when I'd been dumped (again) because of too many missed dates; all the direct result of migraine. I felt like I had been attacked by an invisible alien force that had nothing to do with me, I was just its' favorite victim.

I was sick of the contemptuous looks from nurses in the ER, the knowing glances and whispered conversations peppered with words like 'drug-seeker' and 'addict.' I was sick of spending a third of my life in waiting rooms, traveling to doctor appointments, and holding my breath waiting to see if the "latest, greatest" treatment would work. After a four- or five-month bout of daily migraine I attempted suicide for the first time.

A second chance to fight

Thankful for my lack of success, I re-entered the fight with renewed vigor. There was no way this f*%#king disease was going to dictate how I lived my life! I decided to try a new approach and dove headfirst into the pool of alternative healthcare. I gobbled gigantic doses of vitamins and other various supplements. Alfalfa was my favorite; I was asked by my lab partner in Anatomy 101 why I smelled like a horse all the time. I meditated, went to yoga, went to the gym, ate gluten-free, fat-free, MSG-free, taste-free foods, and drained the toxins from my body at twice-weekly foot bath appointments.

I was massaged, cupped, acupunctured, and acupressured into submission. I had the best collection of herbal teas East of the Mississippi River and enough healing crystals to make 10 shamans jealous. I’d managed to string together three- or four weeks migraine-free, but they always seemed to sneak up on me again.

Giving up on alternative medicine

It would be easy to become ensnared in the never-ending combinations of alternative therapies. I decided there was not a big difference between spending all my money at the pharmacy and handing it over to the proprietor of the local New Age store. At least the lovely folks that staff every emergency room in every state took me seriously when I told them I was under the supervision of a neurologist; the same could not be said for being under the supervision of a certified aura healer or Reiki therapist.

So I headed back to Ann Arbor. My first marriage had failed and the second attempt at wedded bliss wasn’t looking like it was going to set any records (except for maybe Most Nights Spent on the Couch!). At least the ending of either of those relationships could not be blamed on migraine. The 17 days I spent as an inpatient on Round Four turned out to be the most educational.

A new diagnosis

I discovered that my diagnosis had changed. I was now labeled with “severe, intractable, chronic migraine with and without aura.” I had been chastised severely for my continued use of opiate pain medications even though the neurologist from the very clinic that had admitted me had also written all the Dilaudid prescriptions I’d ever filled.

They apparently found a great prophylactic treatment to prevent the migraine attack, but they had not discovered a way to apply that treatment and keep me conscious simultaneously. Large doses of strong antipsychotic medications were well known for their sedative effects but were new to off-label use in migraine treatment.

Now, the clinic of hopelessness

I went home on Day 18 feeling deflated and subdued. It seriously looked like migraine was going to win the battle for control of my life regardless of my efforts. I was severely depressed. Just to ice the cake I found out on my return to work that my career ~ the job I loved ~ was over. After 12 years the practice I worked for had grown too busy to tolerate employees with an erratic attendance record. Without hesitation or consideration for the many years of service I’d given with and without a migraine, I was escorted to my car with the promise that they would write me a fantastic recommendation letter and would not oppose an application for unemployment.

The depression settled over me like a wet wool blanket, suffocating and blocking any joy from getting near me. Feeling like I had failed utterly and completely at everything that comprised normal life, I went for suicide attempt number two. When I woke to discover I had botched it again I wasn’t feeling celebratory. I was angry. I mean red-hot burning anger that seers the paint off houses and cars; it took only one quick glance for people to give me a wide berth.

Everyone stopped asking how I was doing, even rhetorically as it was obvious, and I was likely to be very unkind in my response. As anyone who has suffered from migraines would have gladly informed me; charging around pissed off at the world, constantly scowling, and being uber-negative is no way to get on top of the condition. The condition was actually on top of me and riding me like a $1 pony ride at a county fair. Something had to give and there was no way it was going to be the migraines giving anything except more pain and loss.

New struggles to face

Suicide Attempt No. 3 was out of the question; I refused to be the punchline of a tasteless joke; “she couldn’t even do that right….” No thanks. I wallowed in self-pity for quite some time. It didn’t help. I drank myself stupid. It didn’t help. I went to a pain clinic. After five years of being told she had treated many migraine patients with a great deal of success, I left with no improvement in my condition and a brand-new monkey on my back that needed regular feeding.

What the pain doctor had lacked in honesty she had more than made up for in her willingness to give large quantities of ever-stronger opiates. That was all well and good right up until she decided to retire, and her partner took over her patients. He was appalled by the amounts of OxyContin she was handing out and decided the best way to put an end to it was abruptly. He obviously had never had an opiate addiction!

That struggle consumed a couple more years of my life before I got it in hand and decided I would take my frigging life back even if it appeared worthless to some. I started reading. I joined support groups online. I stopped accepting responsibility for my condition after going to counseling. I learned that I had little control over migraine; what I did have control over was my attitude about it.

Welcoming a different perspective

I refuse now to allow people to ask me “Why did you get this one?” as if I invited it to interrupt my day with gut-wrenching pain. I applied for and easily got Social Security Disability for my condition; heavens know there was more than enough documentation for them to rifle through.

That was a few years ago now. I stay on top of what’s new in the migraine world. I’d love to volunteer for clinical trials and help other migraine patients too but haven’t qualified yet. I have a self-care routine that seems to work as well as anything else I’ve tried. I know now that I get clumsy and drop things frequently 24 – 48 hours before an attack so I can pre-medicate. I quit opiate medications for once and for all as that slippery slope was headed nowhere but down into an abyss of addiction and, ultimately, jail or death. I don’t apologize for having migraines anymore as I realize they are not my fault.

Yes, they are and likely always will be a big part of my life but no longer will I allow them to run my life or make decisions for me. If activities are interrupted, I do my level best to reschedule as soon as possible. If a blooming relationship fails due to my illness, I look at it as his loss. He will be the one that misses out on my many, many good days when I wake up excited about life and ready to try something new.

Acceptance is everything

I am not my condition. Yes, I have a health condition that requires some flexibility and understanding. I’m not always fun to be around but usually I am. I try to apply humor wherever possible. I still see my doctor regularly and take both prophylactic and abortive medications, but I am no longer a slave to my med schedule. My doctor understands I want maximum effectiveness from minimal pharmaceuticals so whatever that means, she does her best to comply with my wishes and I only take 2 medications preventatively now.

The biggest thing that changed for me was acceptance. This is my hand to play; I could bitch about my cards but then no one would want to join my game.

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