I'll Never Stop Fighting for Relief from My Nine-Year Migraine

After almost a decade, spending my life looking for answers is my only option.
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Publish date:
July 28, 2016
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Tags:
doctors suck sometimes, migraines, headaches

I knew my fiancé was going to propose on December 18th, 2015, because the address he gave me that morning was that of the restaurant where we first met.

I dressed for it, I got my nails done, and walked in ready to say "yes," praying that it would happen before the monster came back, the migraine that had reared its head earlier that day. I had managed to keep it at bay and get rid of it almost entirely, flying into action with my usual regimen of a heating pad, three different pills, 45 minutes of bed rest, and ginger tea at the first hint that it was coming on. But it came back right in the middle of dinner, making the 20 minutes between the time our entrées were taken away and our dessert order was placed absolutely excruciating.

Head pounding, my dinner doing uncomfortable things to my stomach, I popped open my pill case, rubbed the back of my neck with peppermint oil, and drank water like I was in danger of dehydrating. The Christmas tree lights from the restaurant's decor glared menacingly against my eyes as he got down on one knee, and I struggled to concentrate on what he was saying. The applause from fellow diners and restaurant staff assaulted my senses like a frying pan to the skull, every clap causing the throbbing to intensify. Despite it all, I was happy, feeling incredibly lucky to find an amazing man who knows that when he marries me, he is also marrying my chronic migraine, one that I haven't been able to successfully rid myself of for the past nine years.

Let me address your first question. I know it's going to be your first question, because it's always the first question we get asked: Yes, I have tried acupuncture. Twice.

My second acupuncturist, seven years after the first, told me point-blank that I'm the first case he's never been able to crack. With needles still poking out of my forehead and inner thighs, he told me, in no uncertain terms, "We should probably just quit."

Warm tears rolled down my cheeks as I silently recalled all those nights on the bathroom floor; the ice packs; the Epsom salt baths; the waiting rooms; the pills, pills, and more pills; all of the minutes, hours, days, and weekends spent lying in the dark or forcing myself to work while periodically resting my head on a desk and praying for the medication to kick in.

I brushed the tears away, picked myself up off of the waxed paper–covered cot, and thanked him, when what I really wanted to tell him, and what my migraine was whispering to me, was, "I told you so."

That's my migraine for you. Twelve medical doctors and seven "Eastern practitioners" in, it's so complex that it just can't be fixed. Not yet, anyway.

It took me eight years; a ton of persistence; a refusal to give up; and a slew of therapists, medications, psychiatrists, and incorrect diagnoses before I finally found the right diagnosis for my mental health condition at age 20: post-traumatic stress disorder. After that, I was able to finally begin to recover and find nearly permanent relief. Now, I have the opposite problem: I've known my diagnosis for almost a decade, and while I have "caught a break" here and there, the chronic migraine that began when I was 18 only temporarily yields to both preventative measures and treatment aimed at providing relief from its symptoms. Sometimes it disappears for days at a time — on a good month, weeks at a time — and I am able to live my life with the thinly veiled illusion that things will always be like this, that I will be able to move about my day normally and keep all of my plans.

But it never stays that way for long.

I have been told that, along with the 38 million other people living with chronic migraine in the U.S., I can "manage it" but cannot "cure it."

Incidentally, out of that number, 28 million are women, and, according to the Migraine Research Foundation, more than 4 million experience chronic daily migraines, with at least 15 migraine days per month. Migraine is also the sixth most disabling illness in the world, and yet, we are told that we have to accept our pain, to make our migraine our friend, to just make peace with the fact that this is how our lives are.

It may seem like we really have no choice but to accept that we have certain limitations and try to live our lives as ambitious women with careers, love lives, social lives, and families. But the alternative, while ugly, is real: We can end the pain altogether with a last resort that many women, unfortunately, have gone through with, unable to live with it any longer. This is not acceptable to me. At all.

So, I still go from doctor to doctor, reciting everything I've tried and/or currently still do. I tell her that I've tried almost every preventative medication that's on the market, the ones I can physically stomach, anyway: Botox for migraines, along with other injections. B2 vitamins. Magnesium. Chinese herbs, yoga, meditation, and a regular sleep cycle. Eating three meals a day and two snacks to ward off hunger. Going aspartame free, gluten-free, sulfate-free, soy-free, and so on. Ordering a fairly popular device from Sweden that looks like headgear from Star Trek, only to have it break on the second day, losing about $150 in shipping it both ways and "non-refundable accessories." Something called compound cream, where you apply the medications you'd normally swallow topically with plastic gloves twice a day, every day, for two months. (It's only available in three pharmacies in Brooklyn and is not covered by insurance. It didn't work.) Ultrasound waves to "break up matter in my neck," medical massage, physical therapy, and, of course, acupuncture, and having my neck and back adjusted by a chiropractor.

To tackle the menstrual migraine, I've tried progesterone only and the combination pill, which gave me my period every single day for a month and made me depressed and anxious. It took me two months to recover from the emotional and physical side effects of that "treatment." I would've rather just had the migraine alone. I've also tried anti-inflammatories and other preventative pills seven to nine days before my period.

And I tell them that, yes, I'm aware of my risk factors, that I'm a woman, which makes me three times more likely to have it, that having PTSD or a history of PTSD ups those odds by another 15 percent, the genetics, where I'm also screwed because both of my parents get migraines, and stress: Yes, my life is very busy and therefore stressful at times, but it's 2016, and, really, who isn't "so busy" these days?

Is it frustrating to have to keep reciting my story over and over to different doctors, especially when they sometimes tell you they can't help you and still charge you a $60 copay?

Is it confusing when one physical therapist tells me to do yoga, and then the chiropractor suggests I stay away from yoga, or at least from moving my head during yoga?

Yes to both of those. I never quite know what the day will bring. I know there will always be more episodes that resist any treatment, spells so bad that, after hours of searing pain and throwing up, I can't even hold down the medication that's supposed to help. There will be incidents like the time my fiancé had to go out on a Saturday night in a snowstorm to find an open pharmacy and put together a new cocktail of medications while on the phone with whichever doctor I was currently seeing, in hopes that we could avoid the emergency room.

But I will not resign to living my life on disability, stuck in a dark room and praying for relief.

I will continue to pay for insurance when I have gaps between coverage.

I will continue take these preventative medications even if they only give me five days of relief a month, because that's better than no days. When they no longer work at all, I will try something else.

I will continue, despite everything, to be more reliable and punctual than many people I know, rescheduling only when absolutely necessary.

I will continue to plan accordingly to account for lost time in advance and take the pills I need to take to be "OK enough" to push through an event or a conference call. When the pills make me so drowsy I need to take a nap, I will work late to make up for the hours I've missed. While trying to keep my career and my personal life intact, I'll keep seeking out new doctors and new treatments, telling myself that being optimistic isn't foolish.

It took me eight years of persistence before I began finding answers to properly care for my own mental health. If I have to spend the rest of my life trying to get physically healthy, that is what I will do.

To me, it's insane not to keep trying. Spending my life looking for answers is my only option.

And when I don't have answers, I'll remember that I am not alone, that all 28 million of us are going through it, and that where there is unity and support, there is always hope.