MIgraines & aspartame

Before my own Migraine disease kicked in, I recall my mother's intolerance of aspartame (NutraSweet)--she realized after some trial and error that she got an awful headache whenever she had this sugar substitute. I kept on chewing sugar-free gum happily, not necessarily enjoying the hyper-sweet, chemical taste of the additive but not feeling sick because of it.

Cue the Migraine disease onset in 8th or 9th grade. Soon I became unable to have even a small dose of aspartame. Once, my senior year of college, I was doing classroom observation for my education minor and accepted a HALF a stick of sugarless gum. (The guy offering it was the teacher, a man a couple years older than me whom I found rather cute. Note to self and others: do not experiment with even a tiny bit of Migraine-triggering substance just to flirt with a boy! He'll end up being weird and creepy and not calling when he says he will.) Within an hour of popping the gum in my mouth (which I masticated for approximately fifteen minutes, I'll have you know), I got an aspartame-induced Migraine attack, first one triggered by the substance in well over a year.

My sensitivity to the stuff probably changes day to day, as is the case with most Migraine triggers. If I have a bunch of triggers happening all at once (stress, altitude changes, shifts in barometric pressure) and THEN I have some sugar-free gum, I'll probably get a severe headache. If I am feeling good, not feeling stressed, and the weather is flat in my low-altitude home state of Georgia, a stick of the gum might not effect me so severely. Dig it?

I'm really displeased with this article Google Reader just found for me. The FDA refutes all connection between aspartame and Migraine headaches. The article uses the incorrect Migraine terminology throughout, saying that some patients claim that aspartame causes Migraine--we here all know the key word should be "triggers" and not "causes."

Having a well-respected (ahem) governing body like the FDA purport that the connection between the substance and the disease is all in sufferers' head just leaves a bad taste in my mouth. Let me admit first that I am one part statistician (one very small part, but still) and do believe that, if at all possible, treatments should be thoroughly evaluated for safety and efficacy using a well-run, randomized study--double-blind and large, if applicable. I do think that you can't put 100% of your trust in people's anecdotal reports, especially if you're going to publish your findings in an official manner.

But.

But.

There's a LOT to be said for what patients experience that cannot be (or at least has not yet been) measured in a statistically sound trial. It drives me crazy to go to my neurologist and get up the guts to tell him about some weird reaction I think I might be having to one of the medications I'm on; it's even harder to tell his stone-faced nurse practitioner that I have weird side effects during my Migraine attacks. They seem to not believe me unless the same reaction/side effect has been discovered by one of the Big Pharma-sponsored studies. And this makes me angry. Very angry.

The aspartame-triggering-Migraine-attacks phenomenon is NOT a myth. We migraineurs are not banding together to bring down the NutraSweet company. The fact that I feel feverish despite my temperature being steady during certain phases of a Migraine attack is indisputable--but, oh wait! My doctor has never heard of that. I must be making this up.

We need to be cautious telling one another that something is a be-all, end-all cure--or a be-all, end-all, vicious trigger, for that matter. But we migraineurs' strength often lies in our grassroots effort to communicate with one another after having stepped away from the doctors' offices and pharmaceutical-company-sponsored "informative" sites. We have to open up the conversation about our disease, our pain, and what we perceive as truth. There's something afoot with the aspartame issue, and I will not lie down and pretend that I have been making up this association all along.