Are your headache journals actually helping you?

I have found some very important details about my chronic migraine journey recently. I started recording my daily pain levels, triggers and med use back in June 2015. I actually liked having a written proof on when I was using certain medications and how well they worked. So I now have 2 1/2 years worth of data. I normally just glance at the sheets once a month to ensure I’m not going into medication overuse and how long I have been on a preventative to see if it helped at all.

Then I lost my job, finding it impossible to find any jobs that could possibility work with my limitations and thus heading down the AISH road (Canadian disability). But when you have a huge stack of random numbers I knew I needed to find a way that would be easy to glance at and see how bad the migraines were, despite all the treatments tried.


I ended up using the % of the month spent at 0-3/10 and 7-10/10 pain levels, as I had 3 data points per day and sometimes they differed greatly depending on what time the migraine actually hit. Excel was a great friend and helped me graph all the data.

My jaw hit the floor when it popped up. I did not realize that the amount of time I sit in mild pain had decreased so much, I chalked up all the difficulty in daily chores to the depression making daily chores harder. I had only two months where there was more mild days than severe pain, mar ‘16 and apr ‘17; this was because of more consistent weather and that alone. There is not much you can do about weather triggers and shows why so many preventative treatments have failed.

There also is a large increase in number of severe days for January and february in both 2017 and now 2018. I’ve had a horrible 6 weeks and was starting to really attack myself because there must have been something I was doing wrong … correct? NO, it is just the typical yearly cycle for my pain.

I never really realized how bad the pain was until the graph showed how few good days I have. I’m not lazy, irresponsible or just not working hard enough; the pain I’m dealing with is severe and not normal. I have a yearly cycle and there are months that are going to be worse or better no matter what I do, but now with that knowledge, my doctor and I can treat the disease differently depending on where I am in my cycle.

So I encourage everyone to do something with their headache journals, trends that you are not aware of may show themselves. This will help you and your doctors to better understand YOUR migraine disease and which months/times tend to be rougher for you and allow a change in treatment during those times.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • FLUTTERBYGAL
    11 months ago

    wow i have thought of doing something similar to this for so long and i will start off good with keeping track but then i forget or it slips my mind etc.i have been having an extremely rough time the last 9 or so months so its hard for me to do anything ….sigh….

  • Katie
    11 months ago

    I too use Excel and also record three scores for each day [pain/impact on waking up, during the day and on going to bed] so that’s reassuring to know that someone else is doing similar. I’ve not found a useful graph yet but do transfer the data over to a summary table for each month. I burst into tears the first time I realised how high a proportion of my time I spend being symptomatic. It is easy to assume you know what’s going on when actually you don’t have a clue until you really look. I’ve yet to find any sort of pattern but carry on in the hope that one day I will identify my triggers.

    Really good point about the location of the pain. I decide to take a triptan based on a vague “feeling” that I get. Thanks to the comments here, I think I can see that it is probably based more on the location of the pain.

    Thanks to Tamara and those commenting. It’s really useful to know what other people are doing and whether or not it works for them.

    Wishing you all the best days possible.

  • looking4OPH
    11 months ago

    Very thought-provoking article and subsequent comments. I keep armloads of detailed records as well (every chronic headache over 10 years), but in different directions. I do watch for monthly patterns, but never considered pain starting area. Smartphone apps are great for quick and easy data gathering. Excel is then additionally great to export data to and quickly graph for quick visuals to find patterns. Good to share what each of us does to learn from others! It would be interesting, and potentially valuable, to compare some of our tracking and visualizing methods together.

  • Sunny
    11 months ago

    One record that was a huge help for me was recording where the pain started. Sometimes the pain or tingling started in the back of my head, sometimes on the side, sometimes above the eye. All these areas correspond to the specific nerves involved in migraine. I saw that different things would work to stop the migraine, depending on where the first indication of pain or tingling started.

  • Douglas
    11 months ago

    I second Migraine Buddy! I do also keep written journals, they aid in helping me come to grips with what is going on with me.

  • tlocker
    11 months ago

    I like Migraine Buddy, but wish they would state up front the costs of the reports. It is touted as a ‘free’ app, but to be useful requires annual fees or payment for each report you take to the doctor. Otherwise it is worthless data.

  • Tamara author
    11 months ago

    when I used an app it worked for almost a year and then won’t open and I lost all the data …. too scared to use technology now ;).

  • combatcorgi
    11 months ago

    I use migraine buddy app as my journaling. I really like it because I can get stastics from the information and print off multiple copies

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