Blog #10: Tracking migraine attacks

Understanding your own migraine disease and advocating for your health starts with knowing the impact your migraine attacks have on your life.

Migraine disease is complex and, as we frustratingly know, there’s no one size fits all treatment.

Migraine disease runs in my family, so for many years I just accepted migraine attacks were always going to be a part of my life. It wasn’t until my migraine brain went into overdrive and my migraine pain wouldn’t go away, I realised I needed to understand migraine better.

Tracking my migraine pain daily has been invaluable to help me manage ‘the beast’. I know some of my triggers and it’s good to know the true impact my migraine disease has. Some months aren’t so pretty, but others are great to look back on and see I only took a triptan twice that month.

I started tracking my migraines daily after my first appointment with my neurologist Dr Rosamund Hill in November 2018.

I decided to finally see a neurologist because I accepted I should probably start on preventative medications. I’d been reluctant to take medication daily so I’d tried other management options such as seeing a naturopath, physio appointments (general physio and the Watson Headache Approach) and trialling an elimination diet.

Looking back, I probably should have tracked my migraines during these treatments as well, instead of relying on my memory. But my migraine attacks were more episodic then.

So since November 2018, I’ve tracked my migraine pain, frequency and medications pretty much daily. I’ve taken the odd month off tracking and now, even though I still have daily pain behind my right eye, my attacks aren’t quite as intense and I only note when my pain increases or I take a triptan or other medication.

The benefits of tracking my migraine disease:

I’ve accepted I have a chronic neurological condition

Migraine disease is an insidious time stealer. Until I began tracking my attacks I couldn’t accurately tell you how many hours or days I had migraine pain.

I feel lucky, as I can function pretty well with low level migraine pain (years of experience!), so I don’t spend days on the couch or in a dark room. Which I know is unfortunately the reality for many people with migraine.  I also work for myself, and at home, so I fit in my work around whatever schedule my migraine plans for me during the week. So sometimes it feels as though I’m not as affected as I probably am, because I work around it. But I’d struggle if I had to turn up to a business Monday to Friday.

Seeing in black and white how many migraine days I’ve had each month has made me accept that in fact I do have something crazy going on in my brain.

It’s confirmed what I anecdotally knew

Besides the fact it’s confirmed migraines suck (no surprise there) tracking has also confirmed I get menstrual migraines. You’d think I would have figured that out already but going by memory it can be hard to remember when a migraine attack started.

Knowing my period is due soon means I can jump on any increase in migraine pain around that time by taking a triptan. I also become more proactive about managing some of my triggers around my period, such as getting an early night, eating well (ish) and not spending too many hours working on my computer.

It’s great for monitoring medication effectiveness

I started taking amitriptyline after my first neurology appointment. I started on 10mg and worked my way up to 50mg. Because I tracked, I can tell you that I reached 50mg on 18 December 2018.

I stayed on 50mg until 10 January and in that time I took sumatriptan 100mg on 6 days; 2 of those days I took sumatriptan 200mg. I decided it was time to increase my dose and worked my way up to taking 80mg by late January. I stayed on 80mg for months, then increased to 100mg and eventually weaned myself off due to a couple of side effects. 

During my time tracking I also tried Topamax. If you asked me now I’d say I only tried it for a couple of weeks, but thanks to my tracker I know I tried it for over a month and I stopped because it made me lightheaded. I also know when I started propranolol, when I increased the dose, when I came off it, and when I started candesartan. You get the point.

It’s also helpful for my neurologist as she can see how effective medications are.

Noticing improvements with complementary treatments 

A couple of months ago I started taking magnesium, Coenzyme Q10, riboflavin (vitamin B2) and ginger. I think it’s too early to tell but I look forward to seeing in a few months’ time how my migraine pain has been.

I’m also working with a woman who is trying to improve my gut health and I’ve started having massages, all of these I’ve noted on my tracker.

If you’re keen to start tracking

I feel a bit old school admitting I use a paper tracker. There are plenty to choose from but I use the Monthly Migraine Diary from the National Migraine Centre, which you can download here.

If you want to track via your phone, 2 apps seem to rate well and I see them mentioned the most.

Migraine Buddy

Using Migraine Buddy, you can enter lots of data, such as pain intensity, where you were when your attack started (for eg school or work), symptoms, potential triggers and what medications you took during an attack.

It’s pretty comprehensive and has a lot of extra features. There’s a free version and pay version. I’ve used it a couple of times but I stopped using it when my migraine pain never went away. It tells you when you log in how long your migraine attack has been going for, I don’t think I liked to see ‘hang in there, your migraine attack has been going for 465 days’!

I think if you get episodic migraines this would be really helpful.

N1-Headache

N1-Headache is a platform I discovered this year. Its website states: Use N1-Headache™ to scientifically discover the everyday things that may reduce the number and severity of your attacks. It looks like it has some pretty good features that help you discover your triggers and how to avoid or manage them.

It also has a function for your neurologist to see your data, but I’m not sure New Zealand neurologists can or do use this feature (if you know, please let me know).

I know there are others and in fact Migraine Again is running a poll to see what apps people like the best. I’ll keep a look out for the results and I might give the winner a try and report back.

Do you track the frequency and severity of your migraine attacks? What tracker do you use? Has tracking helped manage your migraine disease?

I’d love to hear from you. Join the conversation on Facebook or email me: sarah@sayline.co.nz