I knew, even though I hoped it wouldn't, that my migraine was going to try and ruin arguably one of the most memorable moments of my life: the night my fiancé proposed.
Sure enough, he got down on one knee, and I could barely make out what he was saying as the pressure around my brain squeezed so hard I thought my head might explode. The applause from fellow diners and waiters hit me like a frying pan to the skull with each clap, causing the throbbing to intensify. The low-grade nausea I felt as I tried to eat my overpriced pasta churned through what was still a happy moment, but I couldn't help but think about what would happen during the next, even more memorable, expensive, and important moment in my life: my wedding day.
While some engaged women may obsess over small and large details to the point of Bridezilla status, all I want is one thing: for the chronic migraine I haven't been able to successfully rid myself of for the past nine years to take a day off.
I've tried everything that more than a dozen doctors, ranging from Western headache specialists and neurologists to Eastern practitioners and acupuncturists, could think of. This medication, and then that combination of medications. Botox and painful injections of beta-blockers. Nasal spray, special diets, and gross, dissolvable Chinese herbs. An expensive device from Sweden that's currently gaining in popularity that looks like headgear from Star Trek but broke on the second day. I've also tried using Ultrasound waves to "break up matter in my neck." Whatever that means.
Wherever I am in my journey, there's always some sort of cocktail of things that work, then stop working, or relief that comes with a medication that either takes three hours or makes me drowsy and affects how the rest of my day or night will go.
For my menstrual migraine, which strikes every month without fail and has to be broken up with a steroid regimen for six days following, I tried a hormone-based approach. The birth control we tried first, a progesterone-only pill, managed to give me my period every day for a month . I nixed that and tried the combination pill (these contain both progesterone and estrogen) to reduce the number of periods I'd have, which gave me epic mood swings. So I put a big fat X through that one and was actually grateful to get back to the normal pain that I knew.
Most recently, it's been suggested to me by my latest headache specialist that I try lying in a weird-looking sleeping bag with tiny portholes in it known as a Hyperbaric Oxygen Chamber, a method that may or may not work, for an hour and twenty minutes a day for six to ten weeks in a row. That will run me about $1,000 (which insurance doesn't cover) and has been deemed "not an effective treatment for migraine" by a representative from the Migraine Research Foundation (MRF).
I could also, as one doctor who specializes in "targeted injections" casually put it, have a spinal tap. That is, if we make an educated guess that the cause is too much cerebral fluid pressing against my skull, or Idiopathic Intracranial Hypertension. You know, no big deal. Just a freaking spinal tap. The theory is that some migraines may be caused by high spinal fluid pressure and removing some fluid could bring relief. The MRF has funded a study on the subject, but as the study hasn't been completed yet, the results are still unknown.
Over 28 million women in the US suffer from chronic migraines, and 4 million of us have them for more than half the entire month, every month. It's the third most prevalent illness in the world and the sixth most disabling, according to the MRF. As for those of you who don't know that the struggle is real, migraine is actually a disability.
If you're not interested in our complaining, you might be once you hear what this costs everyone —even those who've never had a migraine. Collectively, Americans miss 113 million workdays every year because of migraines, which equates to about $13 billion in productivity losses. The MRF also found that we're taking up valuable space in the emergency room queue, since every ten seconds someone in the US goes to the ER complaining of head pain, and approximately 1.2 million visits are for acute migraine attacks.
We're human beings, not statistics, with dogs to walk and deadlines to meet and birthdays to show up for, and our referral networks can take forever, our doctors spend half an hour taking notes and offer the same preventative and relief-based medications that we've already tried.
Migraine sufferers—or soldiers, depending on how we're feeling on any given day—experience the side effects of the medication and the "it's not working" and the depression and weight gain and vomiting, all of which are almost worse than the migraine itself, but we have to keep trying.
Women especially (migraines occur in roughly one in four of us) read the news for studies, new breakthroughs, like puppies waiting for treats thinking, "How do I get that? Why can't I have it now?"
And of course, there are the studies that just plain scare us. One recent study presented by the American Headache Society found that young adults who get migraines have higher levels of a certain protein that puts us at a higher level or risk for stroke or heart disease.
The solution? There isn't one.
Ditto for a recent study by the University of Cincinnati that found we're more likely to develop a thyroid condition, and that we should probably be monitored for it.
Super helpful! Thanks so much.
In the meantime, we'll be going in and out of doctors' offices, handing over copays or paying deductibles for professionals who listen to us recite our history like optimistic zombies, and then tell us they can't help us, or refer us to someone with a waiting list four months deep.
We don't have four months. This is our livelihood. This is our career, our quality of life, our spirit, our family, our friends, our marriage, our safety at stake. We have plans, big life events, vacations, a work schedule, a commute to make. And we're incapacitated.
Many of us have become so desperate that we try to take matters into our own hands, doing anything and everything to try to find some relief. One woman told me she heard that sneezing helps, so she snorted pepper.
Another flies to Los Angeles multiple times a year to get ketamine injections that take the migraine from a ten to a four on a severity scale, enough relief to make all of that trouble worth it.
Some less squeamish migraine sufferers have tried a daith piercing (in the innermost cartilage ear fold), which some specialists say targets pressure points to ease discomfort, much like acupuncture.
I heard about a dental device that some 500 dentists are using that's supposed to combine the power of ultrasound, orthotics, muscle stimulation, and cold laser therapy to bring relief. I put in a few calls, and find that the device and office visit would basically set me back several months' worth of New York City rent checks.
There's also a facial plastic surgeon based in Houston, Texas, named Kevin R. Smith who has been taking out the tip of a bone called the bone spur that can protrude into the brain (something that most CT scans apparently miss), so you have to get a special CT. He found that the spur, often referred to as the 'shark's tooth', is the result of a small (and forgotten) trauma, like a childhood injury, causing nasal tissue to become inflamed. The expanding tissues push up against the bone and the resulting pressure triggers migraine pain. Makes sense, but he's in Houston, unfortunately, and here I am not in Houston, without the means to travel for surgery or pay for it.
The latest, temporarily perfect formula of physical therapy, medical massage, a daily preventative medication, and careful eating keeps me migraine-free for at least 20 days a month, migraine-plagued for ten, but is already starting to see cracks. I'm on the hunt for a new specialist to recite my loathsome story to all over again.
This is where it becomes easy to feel hopeless while losing entire Sundays and Mondays in and out of sleep and pain and trying to stomach crackers, trying not to imagine an entire lifetime plagued by random pain.
But we don't get to feel hopeless, because we're tough as shit. Our families need us, our kids need us, our dogs need us, and our partners need us. So we take a deep breath, we clench our fists (and sometimes our drugs), we grit our teeth, and we start the cycle all over again.
So, while many brides-to-be are obsessing about losing weight, picking the right table accents, and choreographing the first dance, I'm tracking my period nine months ahead to see what I'll be dealing with in terms of menstrual migraine. And if nine months from now, the only treatment that still works is the combination of muscle relaxers that make me drowsy, I'll be satisfied if I'm able to stay upright for long enough to cut the cake, let alone cut it up on the dance floor.