The Mindful Migraine

Heads up team: today’s post is a summary of notes from the wonderful and ever-giving Migraine World Summit, from the presentation by Dr Christine Lay, a professor of Neurology in Toronto.  It refers to menstruation – frequently – so feel free to give it a miss if it’s not for you.

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Dr Lay started by explaining the distinction between menopause and perimenopause.  Menopause is achieved when you have gone one full year without a period.  Hormones, might however, still fluctuate for up to two years AFTER menopause has been reached.  Perimenopause, on the other hand, is the stage at which your periods begin to fluctuate, moving away from a regular pattern and becoming more erratic, losing their predictability.  During this stage, your hormones are beginning to act chaotically. 

For some migraine people, she noted that an increase in migraine frequency can happen up to two years before you enter into perimenopause.  She suggested that for some people the change in migraines happens before the change in menstruation, and as such, can be the indicator that perimenopause has started.

[I had been hoping that my migraines would ‘disappear’ when I went through menopause, as they had done for others I know.  As such, it’s a bit unnerving to know that the stage of erratic hormones is actually a lot longer than I had imagined.  If it’s two years before perimenopause, plus another two years after menopause (which is by definition one year long to prove your period has stopped), then even if you could coast through perimenopause in one day (which you can’t) you could still be looking at erratic hormones for up to five years.  Ugh.]

Dr Lay said that we know that CGRP (calcitonin gene-related peptide) plays a role in menstrual migraines, with women having a higher level of CGRP during migraines.  I couldn’t quite follow it exactly, but she implied that it could be an issue with the amount of hormones, or their fluctuations. 

[I really need to do a post about what CGRP is – I confess I’m still a little confused by what’s becoming a regular term in migraine pain management].

One study suggested that a drop in estrogen just before a period starts is potentially ‘to blame’ for triggering a migraine.  She noted however, that this study was observational not clinical, and was done in the 1970s, so it is possible that we’re basing assumptions on an incomplete and outdated outlook.

When discussing the symptoms of perimenopause, she mentioned there was an ‘avalanche’ of different things occurring in the body which lead to ‘chaos’.  Hot flushes, difficulty sleeping and mood swings, all bring a greater sense of ‘vulnerability’

The combination of erratic hormones and irregular periods means that it also becomes harder to predict what might have once been regular episodic migraines.  This in turn makes it harder to ‘jump onto’ migraines; we’re more likely to miss signs such as increased light sensitivity without noticing a prompt on the calendar.  She suggested that without predictable clues we might need to rely more heavily on preventative medications. 

She noted that there are a minority of women who get their menstrual migraines during ovulation rather than menstruation.

Dr Lay suggested that hormonal triggers tended to be ‘worse’ than other migraine triggers, harder to treat, and more ‘burdensome’.  During perimenopause, the pain location can change, episodic can become chronic, and the number of ‘well’ days between migraine attacks can change from feeling ok, to feeling sick without the full migraine.

[Ah hello…. that sounds an awful lot like me!]

Dr Lay also mentioned that she tended to be hesitant about using pain numbers to ‘rate’ people’s pain. One person who says their pain level is a 5 can be bedridden, whilst another can still be up and about.  She preferred to use a traffic light approach where green was functional, yellow was slow, and red was disabled.

She suggested that keeping a diary was important to see if there is a link between menstruation and migraines.  Look for patterns.  But also, are there other lifestyle factors at play? Don’t be quick to blame everything on hormones.

[There’s a free printable Trigger-Tracker on my Resources page.]

Interestingly, whilst she noted that medication overuse was problematic, she also mentioned that migraine pain is like ‘a burning ember’ you can try to ignore it, but it stays alight.  If you don’t ‘put it out’ straight away it won’t go away on its own.  Fearing medication overuse is valid, she said, it might become a problem – but it might not. 

Dr Lay was asked if migraines can occur for the first time in a patient at the onset of perimenopause, to which Dr Lay said it’s not common, but nothing is impossible with migraines.  She did say, however, that if your first migraine event occurs during menopause, then you should be looking for other contributory factors to the headache.  Some women who have migraine throughout their life stop at menopause, but others switch to experiencing ‘migraine aura without pain’ for the first time in their life [ugh].

There is no test we can do to see where we are on our perimenopause journey.  Hormones are always fluctuating, so they’re not a reliable symptom – look out for other indicators.

[How cool would it be if there was a pH test that showed us where on the spectrum we were located? Although, knowing how long it takes to move along the spectrum… maybe I wouldn’t want to know.]

Dr Lay spoke about HRT (Hormone Replacement Therapy) and noted that it was a valid preventative treatment for menstrual migraine.  She suggested however, that this should not be the first go-to option as there are other therapies we can try first.  She noted that if you do go down this path, then keep all your doctors in the loop, not just the neurologist, as there are other implications in your family history that should be taken into account including unexplained blood clots and stroke.  She even implied there was a possible link between HRT and dementia, but we still don’t know enough about the long-term effects of using HRT.

Birth control as a preventative medication was briefly discussed and it was noted that a low dose can help perimenopausal women.  But you can’t be a smoker or have aura as there is a stroke risk.  Once you’re menopausal however, the modification of hormones is unlikely to do anything.

She noted that once upon a time, migraine patients were told to ‘wait it out’ because there was a high chance their migraines would end at menopause.  That, she said, is NOT great advice, as the transition period could last throughout your 40s and 50s, making it too long to wait. You need to be more proactive and look for other solutions.

Treatment options for menstrual migraines primarily include lifestyle changes, getting enough sleep, neuromodulation therapy, and devices (she didn’t go into details about which ones).

Being aware of changes, big or small, is one of her pieces of advice.  As you go through perimenopause, you’re also aging in general, so other health changes are likely to be taking place.  If your migraines, or anything else, changes dramatically, she recommends going back to see your doctors.

Dr Lay reiterated that every migraine is different – there is no recipe that we can all follow – but she emphasized a healthy lifestyle; mindfulness, meditation, walking, sleep, hydration, and caffeine-control, as they all enhance brain health and mood in general. 

[Sounds like my model of the ugly duckling and the SWANEY!]

The biggest take aways for me from this presentation were that the perimenopause>menopause stage is longer and slower than I had realized and that I shouldn’t be too reluctant to take my medication.  I also fully related to the notion that in addition to the physical aspects of ‘the change’ there was also a lot going on emotionally – ‘increased vulnerability’ perfectly explains how I was feeling a couple of years ago when my episodic migraines shifted to chronic (and my periods were changing).

Lots to think about.

Take care, Linda x

PS – massive disclaimer – I am NOT a doctor or scientist, only a person with lived experience and curiosity surrounding migraine. Please be sure to speak to a healthcare professional for accurate information in this area.