The Mindful Migraine

The Migraine Summit is currently underway, and I’ve watched 2 of the first 4 sessions available.  So far, I’ve been impressed with the quality of the speakers and the material they cover in the 30-minute sessions.  There’s enough material in each session to make a blog post, but I won’t blog them back-to-back: there’s something a little ‘dry’ about facts delivered as facts (if you know what I mean).

That said, a big part of managing my migraines requires acknowledging that I have migraines.  I started blogging to help others come to terms with the same issues I was having, and to help them find answers to the questions I was asking.  Veering too far away from ‘boring’ topics just places us all back into a ‘hopeful’ not ‘helpful’ way of thinking.

As with all things migraine related – balance is key.  So, I’ll blog about what I hear spread out over the next month, and still try to infuse each post with a little bit of personality.  I’ve decided that I’m even going to be brave enough to tie my post back to my migraine journey by including a photo of me at the end of the post (I can’t hide behind a mandala forever!)

So, the first session I listened to was about controlling chronic migraine with Jessica Ailani, the director of a headache centre in Washington.  She explained that you need to have 15 headache days a month, 8 of which include migraine symptoms, to be diagnosed as having ‘chronic’ rather than ‘episodic’ migraines.  She said the distinction between the two is important because chronic migraine people tend to ‘play down’ the lesser symptoms, acknowledging that they often have pain, but that they assumed it wasn’t ‘that bad’ because they weren’t in full-blown migraine states all the time. 

Chronic migraine people, she suggested, live with pain so long they typically underestimate their pain and its ‘burden’.  They get used to concealing their pain so they don’t risk their jobs, relationships and friendships.  Besides; ‘nobody would believe that I’m in pain all the time’ and ‘nobody can help me with it, so why talk about it all the time’.  The risk of this approach is that chronic migraine can lead to other health problems including depression.

One of the ways to see if you might have chronic migraine is to flip the question.  Instead of asking ‘how many days a month are you unwell?’ [which raises ‘define unwell’ distinctions], ask ‘how many pain-free days do you have a month?’  For me it’s zero, or close to zero.  Which makes it much more obvious there is a problem.  When I was episodic, on the other hand, I could be very sick a couple of times a month, but pain free in between.

Once you acknowledge that you have chronic migraine, you can begin to see that you have a life-changing disease [or a disability if you prefer].  Then you can begin to make life-changing adjustments to compensate.  These changes will be to lifestyle issues relating to realistic goals around exercise and nutrition, but also talking about anxiety and stress.

She talked briefly about misdiagnosis and other headache types, too long to go into, but one stand out comment was the idea that ‘distraction’ often works with other forms of headache, but it rarely works for migraine.  When you’re sick, you’re sick.

There was a brief question about whether episodic migraines tend to lead to chronic – which they typically do.  But there was also a question if the reverse was possible (where chronic migraines can convert back to episodic).  The percentage she quoted was only 30-40% but she felt that this figure was out of date with all the new treatment options available. 

[I’m going to jump in and say if I can move from chronic towards episodic, so can you – let’s all bust those low percentage numbers out of the water!]

There was some conflicting advice regarding the use of acute medication.  On the one hand, she recommended that taking your medicine quickly prevents the pain from escalating, so you don’t accidentally train your brain that it can handle more and more pain.  On the other hand, she implied triptans work too well and we’ve become reliant on them, and other medications, and this can lead to other problems with accumulating long-term consequences in our body as well as short-term side effects such as rebound headaches.  She didn’t condemn patients for the overuse, only noted that we should ‘pause’ from time to time and ask if there’s a better way.

[I am caught up in this dilemma.  I tell myself to ‘wait and see’ if the pain gets worse, because I took tablets yesterday so it’s better to avoid them today, but then I get sicker and sicker and by the time I take the medicine, it’s often too late to be effective.  The next day, I seem to withstand a higher pain level before being ‘tempted’ to turn to the meds.  But maybe I’m weirdly training myself to ‘cope’ rather than ‘heal’, until coping has become the new normal.]

Ultimately, she agreed that chronic migraine was “a pretty terrible disease” but recommends focusing on prevention as much as possible.  All her suggestions were pretty much my mindfulness journey: lifestyle changes that include better nutrition, hydration, brisk exercise (but anything is better than nothing), stretching, breathing, meditation and therapy.  She recommends tracking your migraines, setting goals, and continuing to tweak what you’re trying until you find something that works.  She suggests that even if you have reached a point where you feel like you have “tried everything” remember that you’re always changing, so past failures might be tomorrow’s win. 

I read this as keep trying ‘old’ approaches in ‘new’ ways – don’t give up – you’re a work in progress and so is your treatment plan.

She concluded that most treatment plans for chronic migraines will include a combination of ‘pill’ and ‘non-pill’ options.  Finding the best combination will be trial and error, but you should gain hope from the fact that your options are increasing all the time.

Overall, whilst nothing jumped out as ‘new-new’ advice, it was reaffirming to know that the best way forward is keep moving forward – as mindfully as possible.

To finish on a more personal note, the thing that probably resonated most with me was the idea that we typically ‘conceal’ rather than ‘reveal’ our pain.  Below are two selfies I took a while back to send to a friend I hadn’t seen for a while.  The first is the one I chose because it portrayed me in an ‘upbeat’ way, but the second is a more genuine reflection of how I was feeling that day; ok but tired (the eyelids at half-mast are a giveaway).  There’s no harm in projecting our best possible selves, just remember to make room for your authentic self too.  In the same way that we train our brains to cope not heal, there is a risk that we train our support team that we’re ok when we’re not.

Regards, Linda (the person not the anonymous blogger!)