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.
Have you taken our Migraine In America Survey yet?