A few weeks ago I went to the Women’s College Hospital Headache Centre to hear a lecture by the centre’s director, Dr. Christine Lay. I found myself in a room with mostly women, my age and older, wearing name tags and eating dry mini-carrots in awkward silence. I wondered if they were migraineurs like me, or if the lecture was for medical professionals and I had been let in by accident. I only had to hear the first words out of Dr. Lay’s mouth to know I was not an impostor. Her welcoming, compassionate, and matter-of-fact tone inspired the group’s confidence as she dove into some fast-paced myth-busting and plain-language explanations of the disabling beast that is chronic migraine.
Here is my interpretation of, and reaction to some of the incredibly helpful things she said:
On the migraine brain:
It is inherited. It is a lifelong disorder. There is no cure, but there are many management tools out there, some of which are brand-spanking new. Chronic migraine is one of the most disabling, misunderstood, and mis-diagnosed disorders around.
I already knew this, but man, it was nice to hear it from an authority on the subject. In order to go about my life without feeling majorly disappointed every other day, it has been freeing, and critical, to understand that there is no point in trying to fix myself, or hope that anyone else will fix me. I am not broken. I have a hyper-sensitive brain that is helpful for smelling the compost from the other side of the house, and really unhelpful in the pain department. Learning to cope is realisitc. Wishing for a miracle is not.
Why migraine can be so disabling:
Having a “hyper-sensitive brain” is a full time job. So for many (like me), even when we’re feeling pretty good, the threat of the next attack is always there, and it affects how we move through the world 24/7.
Also, a single migraine attack might mean severe pain for anywhere from a few hours to a few days, but the prodrome and postdrome symptoms mean things like fatigue, confusion, and depression make the time in between attacks pretty crappy too. Basically, two attacks in a week can mean a migraineur has been in a fog all week. Other people experience this! I’m not crazy! Phew!
Dr. Lay did this fantastic job of explaining how the migraine pain takes hold of the brain. I can’t do that explanation justice, but what stood out to me was that once the pain signals make their way to the brain stem and create a chemical pain soup, things that are normally not painful become painful. Regular old touch, smell, sight, and hearing hurt. The brain can’t filter stimuli, so everything intensifies. Yup. That thing that happens when my bra turns into a boa constrictor? It even has a name! Cutaneous allodynia! Not crazy.
She also busted the theory about swelling/constricting blood vessels (vasodilation). Apparently this doesn’t have to happen for a migraine to be in session, and certainly is not a cause or trigger.
I sort of had these figured out already, but it was helpful to have them all laid out at once. She basically said to…
-eat tons of protein, especially first thing in the morning, and often to keep blood-sugar as even as possible
-avoid alcohol, caffeine, sugary things
-maintain a regular sleep schedule (no napping! bummer)
-beware of preservatives and dyes and other synthetic stuff
-watch out for pain meds and triptans.. most of them will actually make you feel worse via medication-overuse pain if you take them too often (like, more than twice a week or even less)
-practice some sort of mindfulness activity regularly (she referenced a study that showed meditation can actually physically change the brain and calm hyper-activity. Pretty cool.)
Someone asked her about the low-tyramine headache diet –that one that I’ve been on for almost a year making me the most annoying house guest and pickiest grown-woman eater on the planet– and GUESS WHAT SHE SAID? She said there is some scientific evidence for it… seritonin in the gut…etc… but that it hasn’t made a difference for her patients. She said sure, watch out for patterns, and avoid super aged cheeses and meats, but mostly, focus on getting a good variety of additive-free nutrition.
HELLO avocado, I’ve missed you. What’s that, banana? You’d like to get in my smoothie? Be my guest. Trail mix? Don’t mind if I do!
THEN GUESS WHAT SHE SAID??? She said that chocolate is not a migraine trigger, but rather a tricky correlation because the hormone fluxes that can trigger migraine can also trigger chocolate cravings. (WEB MD says this too.)
Got that? Rich, dark, pure, sweet heavenly chocolate IS NOT A MIGRAINE TRIGGER.
Anyway, I’ve been eating tyramine-filled foods and dark chocolate galore for a couple of weeks now, and there has been no change in the intensity or frequency of my attacks. Amazing!
She went on to list a whole slew of drugs and therapies out there including everything from Botox to new space-age electro-stimulating headgear. This list gave me hope.
With an anecdote about treating a young patient who was ready to throw in the towel and sign up for long term disability, her final message was this:
Don’t give up or the migraine wins.
She said it twice. This made me cry in public. Again. Damn.
My first appointment with a neurologist at the clinic is next week. On that day, they will start to work with me to find a more effective treatment plan with the goal of reducing my pain by at least 50%. I am so, so grateful for people like Dr. Lay, who are working like mad to study and treat conditions that are complicated, frustrating, invisible, and from a Western medicine perspective, just not sexy. And I can’t wait for next spring when I go to hear the same lecture just so I get to sit in a room full of people who feel exactly the same way.
(Image source unknown/not filtered by licence)