Friday 6 March 2020

How I keep my headache/migraine diary

I have kept a headache/migraine diary since my very first neurology appointment in 2015. It’s one of the best things I have done and has provided both me and my doctors with in-depth information about my migraines and how they have developed and changed over time.

I have tried numerous apps, such as Migraine Buddy but personally I prefer to track them myself, using good old-fashioned pen and paper. I would say the most important thing, is to do a headache diary that works for you. If you find the apps useful and you use them daily then great. If not, I hope my own way of doing a headache diary might give you some ideas of how you could layout yours.

Essentially, each day I record two numbers. A pain score (an average of the day) and an activity score. I score my pain out of 10 and my activity on a 1-5 scale.

The key with recording these numbers is to be consistent. My scale is slightly skewed because I always record my pain quite low (for example, migraine is at about a 6 and I never record much higher than a 7/8). It doesn’t matter how you do it, as long as when you record a 6 for example it’s consistently a “6” the next time you record it. You will start to recognise what level of pain you are at on YOUR scale. This can also be extremely helpful for opening up lines of communication with your loved ones. They will start to understand what different pain and activity scores mean for you and what you're able to do/not do, depending on the level of disability associated with that score.

My biggest tip though is to give yourself room for there to be a noticeable difference. For example, I’m functional at a 5 but not at a 6. It’s very tight on my scale.  It would be a lot easier if my migraine was (7-9) for example.

So, each day, along with recording my pain and activity. I also make a note of any medication I have taken (not daily meds) and I mark an X if I had a migraine attack (usually obviously from pain recording and medication). If you have pain free days, it might be useful to note these down with a tick symbol instead of an X for example, or you can just count up any "0" days in your pain column.

Anyone else dreaming of a 0 pain day right now?

Moving on...

I record this is in a super simple way in my bullet journal. It’s clear to see across the month how my head is doing and how many migraines I have had. It’s also really easy to keep track of how many painkiller days I’m on. Before I started recording it like this, I used to just use the notes in my phone. I would record the two numbers and a short note of the day.

“Monday: 5.2. Short walk this morning. Didn’t feel good when got back. Rested in afternoon”

Every few months I will put my headache diary numbers into an excel spreadsheet for my master headache diary. From here I can easily compare my migraines across different months and even years. It allows me to create simple but effective tables for my neurology appointments that show all the key information such as;

- total number of headache days

- total number of Migraine days

- average pain for month

- average activity for month

- total number of painkiller days

Make sure you clearly explain to your doctor how your headache diary works and what the numbers mean for you. Your 5 might be another patients 8. 

If you are someone who doesn’t see the point in keeping a migraine diary because “it’s bad everyday” please please reconsider. There is likely to be some variation with your activity levels, even if your pain score stays pretty consistent. Its such useful information to have and often when you reflect back over a longer period you realise oh it’s not actually been a dreadful month, just a really bad week. Many migraine treatments also require you to have kept a headache diary to see whether or not you’re eligible for a particular treatment.

If you have any questions or would like help setting up a headache/migraine diary that works for you please don’t hesitate to send me a message and I will be happy to help.