This past summer, I spoke on the phone with a friend who is a pain scientist. I'd originally scheduled the call because I wanted her expert opinion on a particular section of my book manuscript, but when she asked me how I'd been managing my chronic migraines lately, the conversation took a turn.
I was, in fact, not managing my chronic migraines much at all, because there were no chronic migraines to manage. I had just finished three months of what's called the "epilepsy diet"—an extreme version of keto—to treat a metabolic disorder, and I was feeling great. A few weeks after starting the epilepsy diet/keto, I'd stopped getting migraines every day, and now, I could go for weeks without getting a single episode. So by reversing the metabolic disorder, I'd likewise cured my chronic migraine disorder.
That's what I told her, that I was cured. A contentious word, I know, but one I felt that I could claim. After all, my chronic migraines were gone, and I wasn't even on the keto diet anymore.
Her response: "I say this with utmost respect for what you're going through, but—you're wrong."
This doctor's opinion isn't an outlier. Chronic migraine disorder—the thing I claimed to have gotten rid of—is widely considered to be an incurable disease. This is because chronic migraine disorder is categorized as a chronic pain condition and chronic pain, by definition, is the result of something caused central sensitization—a widely-researched phenomenon in which the the nervous system "learns" to afflict itself (and its unfortunate owner) with pain. In other words, a chronic pain doom loop.
Chronic pain being the result of a nervous system gone rogue is what, according to the Institute for Chronic Pain, makes it often incurable (or at least very difficult to cure):
"Chronic pain is pain that occurs in addition to the pain of the original health condition. In fact, the original, underlying condition may or may not have healed. It doesn’t really matter. Chronic pain is pain that has become independent of the underlying injury or illness that started it all."
In other words, once pain lasts for long enough to cause central sensitization (3-6 months, which is often less time than it takes to be seen at a specialty clinic in the first place), experts agree that fixing what originally caused the pain does no good. That's what caused my friend (I'm still going to call her that, you call her what you want) to outright challenge my story—I was claiming that, by removing the "illness that started it all," I had also healed my chronic pain.
My first migraine was ten months long—clearly long enough to get my nervous system stuck in a migraine doom loop. No argument there. But over the years, I'd become obsessed with finding what started my migraines anyway. Doctors, therapists, even friends told me to stop looking for the inciting incident. They all meant well by it—they wanted me to use my energy on managing my disease, not curing it. This was why, six years into having chronic migraines, I still had no idea what underlying issue may have set off my chronic pain, and why. It was an oversight that didn't sit well with me.
If someone were to find the underlying cause of my migraines, how would that not help? It felt like I was drowning in shark-infested waters and being told not to use a life preserver because meh, it won't keep the sharks from eating you in the end.
Toward the end of that sixth year of chronic migraines, I met a doctor who was researching a potential causal link between certain metabolic disorders and chronic migraines. He told me I had one such disorder and that actually, treating the cause could help, only for him to treat that cause with the keto and prove that yes, it truly did. So the successful treatment of my migraines left me feeling more than physically better, I also felt vindicated. Take that, you lousy doctors!
But when this friend told me I was wrong on the phone that day, I began to feel less vindicated and more trapped. I hadn't told many people about my scientifically impossible recovery, because I was afraid of looking like a wackadoodle, and now here she was, essentially saying I was a wackadoodle. And wasn't I? After all, what was my one experience compared to the claims of all the doctors and researchers and pain scientists? You can't say that you've recovered from an incurable disease, can you? Did this one claim make me anti-science? Had I somehow transformed into the type of person who wrote books about coffee enemas and the hidden health benefits of purple foods? Was I bound to set up an Instagram and start selling protein powders and glutathione?
I went home from my office space—where I'd just worked for eight straight hours—feeling ashamed, but also relieved that she'd set me straight, but also amazing compared to how I'd felt for the past six years. In other words, I was very confused.
"Sounds like you got gaslit!" my husband told me that night, after I'd told him I was pretty sure I wasn't actually in remission.
Yes, I said, I suppose I had. And recovery gaslit, no less!
I wish I could say this was the last time I was questioned about my recovery. But as it turned out, the doubts that that experience left behind started a vicious cycle of me being gaslit by…me. Throughout the entire summer I questioned, wondering if I was hallucinating or subconsciously tricking myself into believing that I was better when I, in fact, was not. And just like that, my dream come true would come toppling like a house of cards, and I'd spend the rest of the day feeling like a scummy liar and telling no one anything because IT COULD NOT BE TRUE.
However, not once during those months did my migraines become chronic again.
It's now been six months since doing the treatment, and I remain in remission. This isn't to say that my recovery is necessarily permanent—maybe it will be, maybe it won't be. But that's a problem for future Natalie. For today, the challenge for me is to believe that my recovery is real. All the tension inherent to this reality remains: I don't know how my recovery was possible, I can't explain it fully, and I know that my story sounds, to many people, like an episode of Apple Cider Vinegar.
Maybe there’s something to be said here about cynicism, and curiosity, and the pervasive hopelessness of chronic disease in our society. Why do we accept grim theories as fact and reject joyful facts as fiction? I don’t know. I’m not at the point where I can say much about any of these things. I’m just trying to relish living inside the impossible. 🧠
📣 📣 Announcements 📣 📣
⁉️ Wait, what? That’s right, I recently announced that my chronic migraines are in remission! If you are curious to hear more details, read this post or send me a DM!
👶 Our family is growing! Welcome to the 20 new Brainees who joined us over the past two months. Please say hello and introduce yourself in the comments, or send a DM!
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I get it. I was told for the longest time that my seizures were a result of my trauma and PTSD, and I needed therapy to fix them. As it turned out, they were the result of a metabolic disorder just like your migraines were from a metabolic disorder, and I now haven't had one since May 2024. Sometimes the science just isn't caught up to what's actually going on in our bodies. I hope the migraines stay gone forever!
Natalie, this makes me think of my first time attending the American Headache Society’s annual conference, where I learned the term “interictal”: defined as “the time between migraine attacks.” What I defined as feeling well or feeling good or free of pain, the neurology field called “waiting for the next attack.” I didn’t love that—at all.
I am thrilled for you that you’ve shifted something so significant and I truly hope you are cured! Migraines SUCK.