“So far, there is no convincing evidence for Abdominal Migraines. Migraines just don’t work like that.”
These were the words spoken to me by a Head of Neurology; a very accomplished man at the top of his career, running one of the most prestigious Neurology centres in the country.
He was smiling paternally at me from across the desk, his arms leaning against it and his hands interlocked in front of him, his suit and tie practically glistening with the importance and prestige that oozed from every fibre of his being.
I, the distinctly unimportant, uneducated, scruffy-haired kid in torn jeans and t-shirt that I was, glistened mostly with nervous sweat as I shifted uneasily in my seat, adjusting my direction of lean from left to right.
I never sit straight up in any chair ever; I’m always tilted somehow. Just more comfortable that way.
“Ok, well, what do you think it could be?” I asked. I knew he would have no good answer. Nothing I hadn’t already tried.
I was right.
“Sounds like an allergy, you should see a dietician.”
It’s hard to tell someone whose expertise rightfully deserves respect that they are wrong, especially when you don’t have the benefit of all those many years of medical school, real-world experience and countless citations, awards, and grants to your name. I can’t help but cringe to the depths of my soul when I read stories of folks who are into homoeopathy proudly proclaiming victory over medical science, because “it worked for me!” and so I have developed a habit of deferring to the experts, even when I doubt them. However, not all experts are made equal, and not all illness is necessarily found in a diagnostic manual either.
The reason I was even here, in this room, speaking to this highly accomplished medical professional, had nothing to do with abdominal migraines, or migraines at all for that matter.
Several months earlier, I’d had a tonic-clonic (grand mal) seizure. They were trying to find out if I had epilepsy (thankfully it was my first and so far only seizure, and no epilepsy was found). While I was there, I decided to ask them about something my doctor had mentioned to me. These were experts in the field of brain-things, surely they’d know something about migraines.
Right?
The fact is, I had gastrointestinal problems literally my entire life, and they go through periods of variation, kind of like “phases”. Y’know, like one day you discover them dressed up all in black, smelling of cigarette smoke and listening to My Chemical Romance. “It’s just a phase.”
Sometimes, a phase would manifest as episodes of excruciating abdominal pain. Sometimes, it would be bloating and general discomfort. Most of the time, it included nausea. Nausea was the worst, particularly because I had a fear of vomiting (something called “emetophobia”). It would often send me into a spiralling panic attack, forcing me to pace the floor, back and forth sometimes for hours, controlling my breathing and repeating little “safety” behaviours to myself.
Though certainly unwelcome, it was never a huge concern. That is, until I began working full time. There were days when I would be scared to get on the train in the morning when nauseous. A couple of times, I had to get off at a stop part-way to work and call someone to pick me up and take me home again.
Fear and tunnel-focus can make us do weird stuff. Since I was young, it had been drilled in to me that if I ever felt like I was in trouble or having a crisis at a train station or some other public place, that I should just ask for help. I don’t know if you have ever tried asking for help when your stomach is turning itself in knots and you are in a full-blown panic, possibly on the verge of ejecting its contents: I did, at a central train station, and I got nothing but confused, bemused and mildly annoyed apathy. In all fairness, what are they supposed to do?
Then again, what was I supposed to do??
My mind returned to the Neurologist’s office, and his suggestion of a dietician.
“I already tried that.”
A single eyebrow on the Neurologist’s face migrated north, followed eventually by the other eyebrow, before the whole face gave in to that expression people use when they no longer want to bother. That, or he didn’t believe me. I mean, I was so skinny and pale and young, I bet he thought I just needed some protein, grit, and a tan.
“Well, if it’s not dietary, then it’s almost certainly psychological. There is, medically speaking, nothing wrong with you.”
I realised this conversation wasn’t getting anywhere, and ultimately it didn’t really matter. I had suffered this for so long, I had come to assume it was going to be my life now. I was just being naive, thinking that there might be hope for me. That maybe there might be a legitimate explanation for my infuriatingly inexplicable malady.
My relationship with food had never been what one might call “normal”. I’d always been skinny, mostly because I was incredibly active and athletic, but also because I just wasn’t interested in food as a thing. I ate because I was hungry, and only to satiate that hunger.
For the past few years leading up to this conversation, my stomach issues had escalated significantly; that nausea which used to stop by just to visit before leaving again, turned into something called cyclic vomiting, with cold sweats and excruciating abdominal pain. It would turn up seemingly out of nowhere, though it was more likely during some anxiety-inducing event; it wasn’t consistent in that regard.
I went to hospital one time, thinking I was dying. I will never forget the looks of complete disdain from the hospital staff on that particular day. I was in total crisis, and I was made to feel like a fool for seeking medical attention. Thankfully that was the only time I had such an experience with a hospital (though perhaps that’s due to my avoiding them.)
Much of my medical history was psychiatric: ADHD, ASD, Panic Disorder and general Anxiety. Autism Spectrum Disorder has a lot of overlap with gastric discomfort and upsets, so for a while we thought maybe it was just more of that manifesting. My father had died of Crohns disease when I was 20, so we were also on the look-out for any signs that I might also develop the disease, but no sign of that was present.
Doctors had looked everywhere, poked and prodded, taken nearly my body weight in blood to be run through every test, had scopes of my gastrointestinal tract both up and down.
They looked for cancer, diabetes, thyroid issues, drugs, various types of flu, they even wondered whether I still had dormant malaria from the times I had contracted P. Falciparum during my time in the Solomon Islands. They looked for Hepatitis, Gastroenteritis, Meningitis, Strep, they even checked me for ticks. I was checked for Toxoplasmosis, considering my lifelong history with cats. They looked for gastric ulcers, appendicitis, liver function, kidneys. They did an MRI on me. Actually, they did 3 of them.
Nothing.
Not. One. Thing. Was. Found.
And yet, I was still losing weight, despite already being the skinniest guy I knew. It horrified me. I was struggling to keep food down. I was gaunt, pale, a bag of bones.
I chanced to bump into someone I hadn’t seen for a very long time in the street one day, and they were shocked when they recognised me. “Are you ok?” I remember them asking. “Are you... like, sick?”
I looked like a cancer patient.
I didn’t know how to explain. I couldn’t really say “Ok, sit down, this is gonna take a while”. So I shrugged. “It’s fine.”
The evening before my neurology appointment was when I had seen my GP. I had turned up to the clinic covered in sweat, trembling like mad, gaunt, and emaciated. It felt like an attack of the flu, but there was no virus. I was nearing a point of no return. If I couldn’t escape this cycle, I was seriously considering ending it all.
After listening to my entire medical history, I remember him sitting back in his chair, hands folded across his chest, staring at the wall. The look on his face was utterly perplexed. It was a look I hadn’t actually seen before in any medical professional. It was strangely reassuring. Perplexity meant consideration. It meant he was seriously thinking about my situation. He was running it through in his mind, peering into his experience and education, searching for a glimmer of light somewhere in the darkness.
He was taking me seriously.
“Hmm...”, he broke the silence after a minute or two.
“It’s a long shot, but from what you’ve told me, there’s only one thing you might not have tried yet.”
My ears perked up. “Have you heard of abdominal migraines?”
I hadn’t.
“This is unlikely to work, but I think we should try you on a simple beta blocker. The good thing is that it has almost no side-effects, and we can stop it any time without harm. But there is a tiny chance that it might help, we can just see. How does that sound?”
I jumped at it. A tiny chance that I hadn’t yet taken was a chance worth taking. I was booked in to see him again the next week.
When I came back to see him, I nearly cried. It was the first time in years that I had gone a whole week without nausea. No nausea whatsoever. No vomiting. I could keep food down. I hadn’t had a crisis on a train while commuting. No crises while at the office. I could even eat yoghurt and I felt absolutely bloody fine.
“You really don’t know what you’ve done for me”, I told him.
My voice was breaking. I didn’t want to come across as melodramatic, but it was difficult to avoid: this man had saved my life. Somehow, a simple idea, and a simple remedy, had cured me from an illness that had been utterly intractable, an illness which had eluded so many more highly-paid and highly-respected experts, many of whom preferred to think I must be making it all up rather than admitting to their failure.
It’s been over 10 years since then. I got back to a healthy weight (maybe a tiny bit over-healthy), I re-discovered food (it helps that my wife was once a chef), and after a few years, I didn’t even need the beta-blockers anymore. The migraines are gone, and they’ve never returned.
Research on abdominal migraines is still severely lacking.
Most cases are found in children and adolescents, and mainly in women and girls. It’s startlingly rare, but that’s more likely a factor of its vague diagnostic criteria. It’s one of these “functional gastrointestinal disorders” which can only be diagnosed by eliminating literally everything else which could conceivably cause that particular set of symptoms.
Wanna know what else causes these sorts of symptoms?
Frikkin everything, ever.
So that doesn’t help. I don’t envy those tasked with diagnosing people like myself, let alone curing. It’s not easy. Regardless, there are several clear hints about where to look for the problem.
It seems there are two possible biological mechanisms:
* Arbitrary electrical discharge from the hypothalamus into the cortex, brain stem, and out through the spinal cord
* Variable blood flow through the cerebral artery
It’s highly likely that they’re not mutually exclusive mechanisms, and could explain some variability in the effectiveness of simple treatment with beta-blockers. However, the study numbers are so small, there simply is not enough evidence to clearly show efficacy of any treatment.
People aren’t known to die of this condition.
It’s not heart disease, cancer, or stroke. It’s not a deadly parasite. It’s not flesh-eating. Not only that, but it’s so damn vague, and super rare in adults.
So who cares?
I care.
Those suffering it care.
Sometimes, you just happen to get something that isn’t in the textbook. In that case, f**k the textbook.
Find a way anyway.
