Stop the Pain! Self-Tracking Migraines and a Live Research Study

A common question people ask me is, “Why do you track yourself?” The primary answer, for anyone living with chronic pain, is simple — to help reduce the pain. Migraine, for example, is a chronic condition where self-tracking can have a positive effect.

According to the National Headache Foundation, migraine affects 13% of the US population, with women 3 times more susceptible than men. A study of tracking migraine using an electronic diary showed that tracking helped sufferers accurately predict incidents of migraine. Headache diaries have also been shown to be comparable to clinical interviews for diagnosing migraine.
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This greater self-knowledge that tracking brings is invaluable. Like predicting earthquakes and volcano eruptions, predicting a migraine can help a sufferer either take action to prevent it or prepare for the worst. In order to better understand how to predict and alleviate migraine pain, a live, crowdsourced research study on migraine is being conducted.

The call for participants is below, but first, the story of a self-tracking migraineur.

Mercedes’ Story

Mercedes (her online name) has had migraines for 30 years. That’s almost as long as I’ve been alive. She tracks her migraines in order to minimize how often they occur. Here is her story, in her own words:

This is what I track:

  • Amount of bedrest (since I do not sleep well, I find that bedrest is a better indicator)
  • Foods I eat
  • Stress levels
  • Caffeine
  • Heat
  • Computer work
  • Lunar calendar

What I have found is that incidents of migraines can be minimized if:

  • I get to bed between 9 and 10 p.m.
  • I restrict certain foods such as chocolate, sugar, red meats and salt
  • I meditate and exercise to avoid high stress levels.  By exercise I mean largely tai chi and dancing
  • Since most of my headaches begin early in the morning before I get up, drinking coffee and applying heat to my neck first thing in the morning is beneficial more often than not
  • I have started to track the lunar calendar and the length of time I spend on the computer and, while not conclusive yet, find that on occasion the full moon and/or too much time at the computer coincide with my headache

Essentially to manage my headache, I have to eat right, rest enough, cope with stress, drink caffeine and apply heat (the hot tub is great for this too). And maybe avoid too much time at the computer. But how to avoid the full moon?

But even with that, there are still unexplained times when I get headaches. I am also trying to gauge if the severity of the headaches can be identified in advance but so far I have come to no conclusions.

Mercedes’ story shows the dedication of chronic pain trackers and the complexity of the conditions they face. If enough people living with pain came together to track themselves and compare notes, we would be a lot closer to understanding these conditions.

And stopping the pain.*

Participants Needed for Online Migraine Research Study

CureTogether is conducting a study on Migraine. People who experience migraine are invited to self-report data on their symptoms, treatments, and triggers. The goal is to discover associations in this data to help characterize which migraine treatments work best for patients with different groups of symptoms.

Participation is entirely voluntary, anonymous, and completely confidential. It should take 15-20 minutes to complete. Statistics for the study are posted live, so you will be able to see aggregate results of other participants’ data after completing your entry.

To learn more or to participate in the study, please visit CureTogether or email Alexandra.

* If you don’t have migraines but know someone who does, be a friend and forward this post to them. Self-tracking can help!

Photo by Auntie P.

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5 Responses to Stop the Pain! Self-Tracking Migraines and a Live Research Study

  1. Faren says:

    Thank you for posting Mercedes story. I also track meticulously and suffer from migraine attacks, but primarily chronic headaches. I particularly like the part about the lunar calendar she mentioned, as I’ve considered tracking this too and will look into this more now! I also have been wondering about correlating it to weather patterns/barometric pressure as well as air quality reports sent automatically to my email. I just haven’t linked it up yet.
    Personally, through tracking, I have noticed a strong hormonal link. Not just associated with my menstrual cycle progesterone drop (end of the month/PMS), but also with taking high quality vitamins throughout the month that allow my cycle to hit 28-day averages consistently. (Some other hormone re-balancing or maybe totally related to other nutritional deficiencies despite how healthy I eat or exercise).

  2. Megan Oltman says:

    Thanks for the useful post, Alexandra. The image is a bit horrifying, it almost gives me Migraine to look at it! I quite agree with you on the tracking – I track meticulously and it has enabled me to make a number of changes that help me manage and reduce my Migraines. I will have to check out the Cure Together study.
    I’d love to have you come visit my blog as well at http://freemybrain.com/blog.
    Best,
    Megan

  3. Alexandra Carmichael says:

    Thanks for the comments, Megan and Faren! I think tracking is something people with chronic pain, athletes, and women with menstrual cycles have always done, it’s just always been relatively silent and behind the scenes. Now it’s starting to get publicity because healthy people are building fancy tools and raising this ancient habit up to the surface. From my perspective, bringing light to self-tracking is a good thing that can help many people. Although to be honest I’ve found most reporters reluctant to get into health aspects/benefits of tracking, preferring to focus on weight loss, mood, and sex life tracking (topics that get the most clicks?).

  4. melanie says:

    thanks for all of the info. i have had to migraines with aura (visual silver waves and zig zags… and then excrutiating head ache). the first migraine occured on a full moon (lunar eclipse) and the second on a new mooon. i don’t know if this means anything, though an interesting observation.

  5. SharonF says:

    I have bad migraines, and recently signed up for a new website that prompts you every day to tell it what you ate, drank, etc. and whether you had headaches. The website (mymigrainejournal.com) says it periodically runs statistics on your data to try to figure out what triggers your migraines. Has anyone used this long enough to have seen any results? One nice thing is that you can download all your data off the site, and so that way you have an organized record, but I am really curious to see what the statistics will tell me… –Sharon

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