Chronic Migraine, Symptoms, Treatment, Triggers

“Congratulations,” a Dietary Wake-Up Call

“Congratulations.” Of all the responses I anticipated before publishing An Almost Normal Life Thanks to an Extremely Unhealthful “Diet,” being applauded never occurred to me. When that congratulatory email arrived in my inbox, I was floored. Having had a prior email correspondence with the sender, I knew they were coming from a place of desperation. To them, any sort of improvement, even at the cost of malnutrition, was a tremendous gain. To me, it was reminiscent of people who made jealous remarks about my weight loss when I was gaunt from such severe nausea that I could barely eat. In both cases, the outcome—whether fewer migraines or (unwanted, unnecessary) weight loss—the price is too high.

Serendipitously, I saw my therapist/naturopath the afternoon I received that congratulatory message. She listened as I expressed my dismay that my malnutrition could be a reason to celebrate. She let me rant about how frustrating it is to track down food triggers when Every. Single. Thing. I eat seems to be a trigger. She handed me tissues when I cried about how much I miss food, baking and cooking, and sharing meals with my loved ones. She recommended a bunch of lab tests to check the nutrient levels in my blood. She got the ball rolling on metabolic testing. She explained the hormonal impact of starving my body.

Starving. That was the first time anyone had spoken that word aloud. I’m getting enough calories, so I’m not technically starving, but I’m getting about as much nutrition as I would drinking soda all day. I am starving myself nutritionally so I can pretend to live an almost normal life. The body needs high-quality fuel to run efficiently, and I’ve been running on fumes for months. It’s no wonder I’m in a constant brain fog and my limbs are so heavy it feels like my bones have been replaced with sandbags.

“Congratulations” was intended as a show of support and, in a roundabout way, that’s exactly what it was. It was a wake-up call—no, more like a slap in the face. Starving myself of nutrition relieves the migraine symptoms temporarily, it does not eliminate them or their cause, and it has potential for long-term harm. These months of operating at 50% much of the time have been amazing, but I will no longer trade my overall health for temporary relief of migraine symptoms.

Please cross your fingers, send good vibes, pray, or whatever it is you do that I’ve gathered enough information from this absurd “diet” that my dietician, naturopath, and doctors can investigate some previously unexamined issues, like food chemical intolerances, enzyme deficiencies, and mast cell and metabolic disorders. My greatest hope is that I will not only find some answers for myself, but that my discoveries will help others with headache disorders find the missing pieces of their treatment puzzles.

Coping, Society, Symptoms

Debilitating — But Only Moderately Painful — Migraine Attacks

My fingers are crossed that I’m in the postdrome of a debilitating five-day migraine. My entire head throbbed with sharp pain localized above my left eye, my left ear ached and burned, and my teeth were intensely sensitive. I was nauseated and dizzy. I’ve been massively fatigued, my limbs feel weighted down, my mind is barely coherent, my body aches. It was definitely a migraine and, yet, migraine’s most famous symptom, head pain, was only a level 4.

This is my new reality. The pain is much less severe than it once was — for which I’m endlessly grateful — but the migraine attacks still come frequently and can still be debilitating. People who have “silent” (acephalgic) migraines can attest to this, but applying it to my own experience is difficult. While non-headache symptoms have certainly been troublesome in my years with chronic migraine, the screaming head pain has always taken center stage. With pain demanding my attention, I didn’t realize just how much of a toll the other symptoms took. Not only am I regularly astonished by how severe the non-pain symptoms are, I’m so used to pain being my guide that I tend to dismiss the impact of any other symptom.

I keep thinking that migraine, with it’s wide-reaching and varied symptoms, is a weird illness, though I have to wonder if migraine isn’t weird, but that popular understanding of it is flawed. Despite patient advocates and migraineurs yelling, “Migraine isn’t just a headache!,” head pain is the symptom everyone associates with migraine. Even I, one of those people who gets that migraine is a neurological disorder with symptoms that affect the entire body, get hung up on the head pain part of the issue.

I wish we could rename migraine and start fresh. That we could disseminate the current knowledge about migraine without the historical baggage and misunderstanding. That we could focus not on the head pain part, but on the neurological, whole body impact. Maybe then the world of non-migraineurs would have a bit more respect for the major impact this illness can have on a person’s life. Maybe then I could have a little bit more empathy and sympathy for myself when I’m laid up and telling myself, “But this migraine’s not that bad.” Because, while the pain was mild, the rest of it was pretty miserable.


Feeling Dumb in a Brain Fog

The past two weeks have been filled with major brain fog. I try to write and the words just won’t come together. It’s not that I can only turn out mediocre drafts. It’s more like I’m looking at a puzzle and can’t even determine which pieces might fit together, never mind trying to figure out where they fit in the larger picture. I write words, move them around, delete and rewrite, but nothing makes sense.

That’s when I’m trying to write something from my own mind. Even more difficult is synthesizing information from other sources. I read the words and think I understand them, but can form no cohesive thoughts on them. I start sentences and am at a complete loss on how to finish them.

The pain of a severe migraine is horrible, the nausea can be gut-wrenching, the fatigue is a drag… those are all physical symptoms that, while miserable, are separate from my sense of self. My intelligence and ability to write, however, are critical elements of my personality. When I’m shrouded in a dense brain fog, I don’t feel ill, I feel dumb. And that’s something I don’t think I’ll ever learn to cope with.