Seven years ago, when I was 27, I got my first-ever migraine. Ten months later, it was still there.
Even after the 10-month migraine ended, frequent weeks-long migraine attacks and bouts of stabbing “icepick” headaches kept me in pain more often than not. I was a software engineer at Facebook, but had to take leave from work because looking at my laptop screen made my head scream in revolt. I would never go back.
Instead, over the next six years, I’d be hospitalized four times for chronic migraine disorder, the most disabling form of migraine disease, which is the second most common cause of disability globally. Chronic migraine involves, among other things, having a headache for 15 or more days per month. I’d also try all of the available medications for migraines despite their side-effects and begin avoiding bright lights, loud noises and a long list of foods that other chronic migraineurs told me could worsen my pain including gluten, tomatoes, dairy, bananas, certain varieties of onions, lemons, olive oil and anything aged – including leftovers.
Early on, I visited one of the country’s top-ranked neurology practices, looking for answers. My MRI, CT scan and bloodwork were all normal, yet clearly something was wrong. But the neurologist insisted this was the end of the road.
“You’re thinking of migraine like a virus, or a broken bone,” he said, “but it’s actually a Pandora’s box. And you’ve, unfortunately, already opened it.” By this he meant that my chronic migraine disorder, now unleashed, couldn’t be reversed.
This doctor’s opinion was, I would soon discover, the prevailing one within the American medical establishment. Though episodic migraine – the much more common form of migraine disease – is also incurable, it can usually be managed into remission through a combination of lifestyle changes and pharmaceuticals. Chronic migraine, however, is widely considered incurable in another, much more damning sense.
As the theory goes, chronic migraine is the result of a nervous system gone awry. It supposedly starts when neuroplasticity – the brain’s ability to rewire itself – snowballs into central sensitization, a widely researched phenomenon in which the nervous system is stuck in an overactivated state. This overactivated state creates migraines ex nihilo – or, at least, absent of any other physiological trigger. These migraines then sensitize the nervous system even more. In other words, it’s a pain doom loop.
Central sensitization is why every chronic migraineur I’ve ever known has been told to stop fighting and accept their disease. Doctors and therapists told me to accept my migraines because there is no one-size-fits-all treatment for central sensitization, and what’s more, a hyper-sensitive nervous system can easily turn emotions like anger and fear into additional pain. This is true of other chronic pain conditions, and something I experienced first-hand (getting angry about my pain would almost always spike me to a 10 on the pain scale).
Choosing to practice acceptance was one thing, but being told to do so – by medical professionals, no less – felt like being told to give up. Was I really expected to live the rest of my life like this?
But acceptance seemed to be my only option, until almost a year ago, when I met Dr Kyle Bills, a neuroscientist and the founder of the Migraine and Neuro Rehab Center in Provo, Utah.
“These, I think, are the problem,” he said as he pointed out sawtooth zigzags on a graph of my blood sugar readings. My migraines, it seemed, were the result of metabolic irregularities. For the past month, I’d been wearing a continuous glucose monitor that logged my blood sugar every few minutes, and each migraine episode I’d had while wearing it correlated with a rollercoaster-like spike and dip.
I was stunned, and more than a little angry, though not at Bills. I was angry because I’d seen so many doctors over the past six years, even traveled across the country to a well-regarded headache specialist, but had always been told to just try a different medication or procedure. Because chronic migraine was an irreversible Pandora’s box, no one had thought to investigate possible non-neurological causes. In fact, I’d often been told that such causes either didn’t matter, or didn’t even exist.
The condition that caused my chronic migraines was not central sensitization but postprandial hypoglycemia, a blood sugar dysregulation condition. In his peer-reviewed case-control research study recently published in Frontiers in Neurology, Bills identified similar blood sugar dysregulation conditions in the majority of chronic migraine participants.
Though Bills doesn’t deny the role that central sensitization eventually plays in migraine “chronification”, his research does refute the theory that chronic migraines are caused by a glitching nervous system. He instead posits that chronic migraine begins when ongoing blood sugar dysregulation events overwhelm the hypothalamus, the part of the brain that triggers insulin release.
My first thought, upon hearing this: does this mean chronic migraine, contrary to what I’d been told, was reversible?
Bills’s recommended remedy for my postprandial hypoglycemia was the ketogenic diet. Using keto to treat chronic migraines is actually not much of a stretch, as keto is already widely used to treat epilepsy, a condition that, like migraine, involves a sort of “electric storm” in the brain that can temporarily inhibit brain function and cause inflammation. Though Bills’s most recent study isn’t about treating migraine with the ketogenic diet, this will be the focus of his future work.
After I followed Bills’s advice to do a three-month medical keto diet to reset my metabolism, my migraines were no longer chronic. Though I still get occasional migraine episodes, they are infrequent and not nearly as severe. Most of the “triggers” I’d spent years avoiding also aren’t triggers any more, and though I can’t go crazy with my refined sugar intake, I’ve returned to eating a pretty normal diet – a diet that allows me to occasionally eat pizza for dinner, for example – without relapsing into postprandial hypoglycemia.
Given that I still have what qualifies as episodic migraines, it would be wrong to say that Bills has cured migraines in general. But his discovery of what makes migraines turn chronic is a huge medical mic drop, as it proves that chronic migraine – a disease that affects approximately 2% of the global population – can be, in some cases, cured.
When I told a pain-scientist friend about being one of the few people who have recovered from chronic migraines, she said: “I have the utmost respect for what you’re going through, but – you’re wrong.” Because she viewed chronic migraine as caused by central sensitization, my experience couldn’t exist in her world. In the end, we agreed to disagree.
I’ve been in remission for 10 months now. I don’t know if I’ll relapse, or when – though Bills’s discovery is poised to shift the entire conversation around chronic migraine, at this stage, there are still more questions than answers. But getting my life back, regardless of how long I get to keep it, was enough to give me what I needed most: hope. Which is, as the story goes, exactly what remained behind in Pandora’s otherwise-emptied box.
