Why I don’t recommend migraine diaries.

Once upon a time, many migraine attacks ago, I used to obsessively keep detailed diaries on my migraine (and everything else). I don’t anymore, and I don’t recommend anyone else do either.

Doctors love diaries. Neurologists all have their own version and instructions on what they’d like you to keep track of. Count your headache days, and your migraine days. Did you have nausea, light sensitivity, aura? When was your period? What did you eat? What was the weather like? What medications did you take? Did you see a partridge up a pear tree?

Doctors are basically scientists, and diaries are data. Scientists like data.

But here’s the thing: obsessively tracking every little niggle in your body and everything you expose your body to leads to a spiral of obsessively focusing on the bad. That leads to anxiety first, as you over analyze every niggle and furiously record potential triggers, and then depression will set in if your constant mindset is ‘am I sick?’

When I say I obsessively kept diaries, I mean *obsessively*. From the time that I suddenly snapped to chronic in April of 2012, it was maybe three months before I plunged from just tracking what medications I was taking and the early symptoms, trying to figure out what was going on at a time when I still didn’t have a firm diagnosis, to keeping an hour by hour account of *everything*.

This is a transcription of a single attack in August 2012 from one of my diaries:

• Tuesday 1am: woken by sharp pain down jaw and back of neck. Not sure if migraneous or grinding my teeth. Took panadol and put mouthguard in.
• 6.30am: nauseas, cranky, achy. Pain in back of head/neck still there. Took 80mg Relpax, topamax, zofran.
• 10.30am: feel like death but no sensory disturbances. Ache in L arm. Headache in back of head (8/10). Zofran worked but balance issues and swelling of hands and faces as well as shoulder and neck pain.
• 5pm: Headache between temples as well as back of head and neck which never moved all day. Dull ache still in L arm and around elbow. V. grumpy, achy, poor concentration/balance. Earlier swelling resolved in about two hours. Took nurofen and topamax.
• 6.10pm: Visual aura – white flashes on mainly the right eye. Took aspirin.
• 7pm: Nausea back. Visual ok. Headache hasn’t moved.
• 8pm: death and morphine not being available, I’m trying coke, panadol, heat pack on neck and sleep.
• 10.50pm: Headache through temples. back of head same. neck seems better. Dull ache still in L arm, some numbing in L jaw, neck. Concentration, balance still seem impaired (but half asleep?) Took aspirin and nurofen.
• Wednesday 4am: Nausea woke me up. L jaw and neck numb and stiff, dull ache in upper L arm. Headache unchanged. Nurofen and stemetil.
• 11am: no change. Nurofen.
• 4pm: Sleep helped improve my mood and aches some, concentration improved a bit but not great, balance still impaired, headache unmoved. Nurofen.
• 6.45pm: Nausea, headache, numbness and pain in L arm, neck and jaw kick up again. Took 40mg Relpax + topamax + coke.
• 8.50pm: minor allergic reaction to dinner – claratyne and imodium.
• 11.30pm: Reaction controlled. Earlier relpax had no effect, took nurofen.
• Thursday 3.30am: headache bad. Aspirin + nurofen.
• 9am: headache manageable. Numb and ache L arm, jaw unchanged. Some confusion/concentration issues. Topamax, aspirin, nurofen.
• 12.50pm: No change. Nurofen.
• 5pm: Intermittent pins and needles in L hand otherwise no change. Nurofen, aspirin, topamax.
• 10pm: No change. Headache consistent. Numbness and pain in upper L arm, neck + jaw consistent. Some speech issues, concentration and coordination problems in patches throughout the day but nothing prolonged. Nurofen and aspirin.
• Friday 8.30am: No real change. Head seems less foggy concentration wise but still some coordination problems. Topamax, nurofen, aspirin.
• 12md: No change. Speech delayed/slurred a bit. Nurofen + aspirin.
• 3pm: No change. Feeling pretty crap. Nurofen.
• 7pm: Some tingling in jaw and neck, headache throbbing a lot, but really no substantial change. Topamax + nurofen + aspirin + coke.
• 10.30pm: no change. Try paracetamol for variety.
• Saturday 8am: Topamax + nurofen. Sensation back but still stiff L arm, neck and jaw. Headache consistent.
• 12md: Numbness back upper left arm, neck, jaw, headache unchanged. Some concentrations issues again today and slurring of speech. Nurofen.
• 7pm: thumping, throbbing headache woke me up. Taking claratyne 1/2 hour before panadeine forte.
• 8.30pm: allergy to codeine confirmed. Taking another dose of claratyne, imodium and antacids to try and control reaction.

This resolved a bit on Sunday but the next attack (which was one that landed me in hospital) kicked in by midday, so I’ll stop here, but you get the point. Forgive the fact that my migraine literacy was low at this point, I had no idea how to use triptans, and knew nothing of MOH. Also, should there be any emergency doctors/nurses reading this – this means that all of the above was not bad enough to send me to emergency. If someone with migraine presents in your ED, it is worse than this.

What you probably won’t guess is that this is just the symptom and meds diary – I also kept a general diary to track all my appointments, everywhere I went etc that would include ratings such as ‘bad day’ or ‘very bad day’ to refer to what was going on in this diary *and* a food diary to track literally everything I ate and drank. I carried around multiple hard bound journals to track all this stuff, all the time.

And it took years before I realised that all this obsessive recording was causing me to catastrophise, increasing the severity of symptoms in my mind and fuelling the anxiety of what was going to happen next. Pain was perceived to be greater than it was, thus I took more medication than required, and ended up in medication overuse hell. I’m not saying the pain wasn’t real – it absolutely was, and it did need management – but diarising fuelled over-management and made me sicker.

Diaries are useful. Not to identify triggers – they are utterly woeful at that. But they are useful in establishing a baseline, or to record changes with changes to medication. I personally never recommend that someone with migraine keeps a diary for more than three months. That’s long enough to track a change in medication – you’ll know yourself if it is working or not, but keeping a record of what acute medications you have taken and really basic symptoms can illuminate the magnitude of changes a bit.

Once I figured out the damage that diarising was doing to my mental health, and by extension my physical health, I refused to diarise any more. When a neuro asked for a diary, I’d colour in the boxes for them. But I would do it retrospectively: so instead of spending everyday thinking ‘am I sick’ I would flip it to a Sunday morning reflection exercise of ‘which days this week did I have no symptoms’, and then fill in the blanks, from a postion of being grateful for the good. From time to time I’d record what meds I’d taken if I was concerned at all. But usually only for a couple of days to see if the way I recalled or felt I was using my pain and nausea relief was on the money or not. It usually was.

(I do have to say that some people love keeping diaries, it makes them feel like they’re in control, or helps them manage their condition. If it works for you, knock yourself out. But make sure you live a little too, and have a plan to manage the anxiety.)

The only time I attempted full tilt diarising again was when I started Aimovig. I installed Migraine Buddy as suggested, and would spend maybe an hour of every day clicking things in that app. It took no time for me to be constantly thinking ‘am I sick’ again, obsessing over each niggle, and anxious about the next attack. And then, when I did have an attack, the damn app would constantly ask me if I was still sick! Yes! Fuck off! And then, I got frustrated that the app was so headache focused and I wasn’t able to record my symptoms (which are predominantly not headache), so I went to the shop and bought the same kind of paper diary I had in the dark days. And off we went again.

Until I got really depressed, really quickly. Feeling physically better than I had in almost a decade, and my mental state was in the trash.

I uninstalled the app, and filed away the paper diary. Remind me not to go down that hole again.