Introductions

I have this fantasy. In it, I’m able to clone myself and every time a challenging decision comes along, one of my selves picks one option and the other self picks the other option. They continue on and, eventually, find out which decision was better. Can you tell I am the indecisive type? I’m also a trained researcher. I research everything, from what car to buy to what shampoo. Now try combining indecisiveness and a compulsive need to research. Good times.

I like to call my imaginary, other self my personal counterfactual. Never have I wanted Counterfactual Me to be real more than since my migraines turned chronic. Two years ago I was a 30-something (still am) living in Boston. I was working almost full time while also working on my PhD. Between the summer of 2015 and winter of 2016, a lot of very stressful events happened at once. The effects were cumulative on my health and by the spring, my occasional (episodic) migraines were becoming more frequent and I was battling a headache every day. Since then, my migraines have worsened to the point that I left my job and moved back to my hometown in Vermont.

I did finish my PhD, though! My degree is in research and evaluation. In my former life, I evaluated the effectiveness of educational programs and policies. In my current life, I like to say that I am my own research project. I’m constantly faced with decisions as I live my life with migraine. Before I eat breakfast, I’ve made more mental calculations about what will or won’t make my symptoms better or worse than you can imagine.

That brings me to the concept of triggers and treatments. I am constantly faced with exposure to a possible trigger or treatment. I used to know my triggers. I had a handful. I would do my best to avoid the avoidable ones and prepare the unavoidable. And I basically followed the same treatments for 20 years. For the past year, I have always had some level of pain. [That is why I now say I have migraine instead of I get migraines.] Managing triggers and making decisions about treatments has become a full-time, but poorly-funded study.

That is where Counterfactual Me would be amazing. In research, we often want to know if something works. Ideally, we’d have two identical people; I mean, literally cloning the same people. One group – or person –  would be exposed the trigger or treatment and the other wouldn’t. Then you’d measure an outcome for both and compare. The problem is that we can’t clone people or groups. The counterfactual (a.k.a. control) group only exists in theory. I wish for Counterfactual Me all the time. She would be exposed to the possible trigger or try the new treatment and I would go about my “business-as-usual. Then we’d see who felt better afterwards and decide which option is best. The most frustrating thing about chronic migraine is I have to make what feels like a MILLION decisions every day without Counterfactual Me Each decision feels like it’s as critical as the next in terms of whether it will exacerbate my symptoms and I don’t always have a lot of data to draw on.

Here’s a taste of my thoughts in a day.

Food. I never had food triggers when my migraines were episodic. I needed to avoid certain foods because of another chronic condition, but none triggered my migraine. I still don’t know if I have food triggers, but I’ve gone on a strict elimination diet to see if anything is contributing to my migraine symptoms. It’s not perfect science, so I constantly look things up to see if they are “safe.” If food lists disagree or I can’t find a specific food on any list, then it becomes a roll of the dice: Do I eat this pepper, strawberry, spinach, salmon, etc. and possibly worsen my symptoms? The most aggravating thing is that food triggers can kick in anywhere from 1-72 hours after exposure and since I have pain that is constantly fluctuating, I can almost never find a pattern that is clearly attributable to a specific food. I’m at the point where I’m grumpy and just want to eat pizza. And cake. Oh, and some pad Thai.

Activities. This can be anything from going shopping, to going to my nephew’s baseball game, to taking a walk or kayaking. Sometimes I just plain feel awful and I’m not leaving the house or exercising. Other days, I’m passable for human and should do all those things, but what if I do and it triggers pain? What I’ve learned recently is that low-impact activity like a walk or short paddle won’t make my symptoms worse if I’m having a decent day. That’s helped me gain a little confidence back. I just don’t get enough decent days.

Treatments & Insurance. This one is probably the most anxiety inducing and deserves a blog (or blogs) of its own. In short, the past few months brought new doctors to my treatment team. That has meant revisiting some of the same treatments my last doctor tried, stopping some ones that weren’t working, and starting some new ones. At each choice, though, it felt like I was always making the wrong decision. Do I do the standard Botox protocol because new doctor thinks old doctor’s protocol was wrong and new doctor’s will work better? Sure, but I win two months of free flu-like body aches! Do try an occipital nerve block two days before my PhD robing ceremony? Sure, but I end up with a raging migraine the day before which sends my anxiety through the roof! Do I take my abortive medication for the third time this week and risk getting into a rebound cycle or let the migraine continue to fester? Eh, does it really matter? My meds don’t work that well anyway and the pain always comes back. And the million dollar question (no joke), do I stay on my expensive COBRA health insurance or go on a state-subsidized plan that a bunch of men and women in Washington, DC are trying really hard to take away?

Now just expand this to decisions about whether the shower is too hot, the shampoo too smelly, the eggs too high histamine, what I’m going to wear (hat, sunglasses, both), if I’ll drive or call Uber (that was before, now it’s drive or call mom), whether I use heat or ice, if my pillow is too thick, … and on, and on.

It’s a really sh*tty way to live. It’s gotten old. So on some days, I eat something I probably shouldn’t. I never throw the rules out the window completely, but sometimes I’m just not as obsessively careful. On some days, I’ve started to just do stuff even though I hurt. That’s HARD! At a certain point, the pain isn’t ignorable. That point is something I’m exploring. For another post. Thanks for getting this far. I hope you’ll stick with me!