Project Nesso, Chapter 2: Gathering Data

“It is a capital mistake to theorize before one has data.”  Sir Arthur Conan Doyle (http://www.brainyquote.com)

During my office visits, my neurologist would ask me how bad my headache was, on a scale of 0-10.  Since I only saw him one every few weeks, I thought the answer to that question couldn’t possibly be giving him that much to go on.

What if I were to chart my headaches multiple times a day, every day?  Could I learn something about them?  Could I start asking some intelligent questions about them, like “do they tend to get worse in the early afternoons, right after lunch?” or “are they worse if I don’t get a good night’s sleep the night before?”

That led me down the road to all sorts of things that I thought could be contributing to them – how “stressed out” was I feeling, how much liquid had I consumed that day, had I eaten recently, and so on.

I built a custom wearable, wrote a survey app for my desktop and eventually my phone to collect this data.  While the wearable was short-lived, I collected more than a hundred thousand data points with the app over the course of a year, and tried to see if there was any correlation between the strength of my headaches and things going on around me.  There were some mild correlations, but I didn’t find anything like a smoking gun.

In April 2016, I decided to try to rule out any food-related triggers.  My family and I spent that month going through a program called “The Whole 30”.  The authors talk about various foods that cause inflammation – milk, grains, sugar, etc. – and how by abstaining from them for 30 days you can clean out and “reset” your system.  They don’t specifically talk about headaches, but I wanted to see if cutting those foods would result in any improvement.  It didn’t.  My headaches before, during and after the Whole-30 remained about the same.

In July 2016, I started what I thought was the next logical step – a massive research project.  I set out with the ambitious goal of reading every piece of headache research I could get my hands on.  I also started identifying the researchers doing the leading-edge work in this area.

That undertaking spun into what I believe will become a very interesting future software project.  However, after 8 months of pursuing that, it dawned on me that now I had two problems.*

I needed to get back to the real quest – my headaches.  I felt my best bet would be to go back to the experts – researchers and medical doctors – rather than try to become one myself, but something about my experience as a patient nagged me.

 

*Apologies to Jamie Zawinski

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2 thoughts on “Project Nesso, Chapter 2: Gathering Data

  1. Thank you Emily! I actually saw your presentation for the TriggerFigureOuter a few weeks ago, courtesy of CJ, and we both thought it was very cool. The similarities between it and Nesso also struck me. I’ll email you here shortly – I’d love to hear more about the future for TFO.

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