“What frustrates you most about living with migraine disease?”
I’m not at all sure I can choose one most frustrating aspect of migraine.
Is it all the time I have lost from life, family, and friends over the years? I guess I would say no — that is the saddest part.
Is it all the things I could/might have done without migraines? Well, that part is mostly infuriating.
Is it the fact that migraine has been so misunderstood, under-researched and under-treated? Or that migraineurs have been misunderstood and mistreated? Hmm… that would rank right up there — with most sad and infuriating!
Is it the pain and sickness? I don’t think so, although the bodily symptoms are surely the most excruciating, debilitating and physically draining.
No, what frustrates me most about living with migraine has to be not what I feel, know, or can measure and learn about it, but rather that which is unknown. All the stuff we don’t know.
What has brought this to me? What are the actual, provable causes/triggers for my attacks? Nothing appears to match up consistently regarding food, hormones, environmental factors, stress or weather! It’s not only frustrating, it’s humiliating, it’s disgusting, it’s exhausting…
For years off and on, I have kept diaries of hormonal activity, diet (suspected foods), exercise, weather, stress factors, and so forth, and have never been able to pinpoint consistent factors or causes of attacks. (This is not to say that keeping a diary is not helpful – I believe it is definitely worthwhile, especially when you begin to learn your patterns and triggers.)
Many times I knew attacks were hormone-related because they occurred horribly and regularly around my period or ovulation, or I could tell it was wine, alcohol, or too much of a certain food, or I was certain an emotionally stressful event triggered an attack.
During my two pregnancies and breastfeeding months, I was blissfully migraine-free. So now that I am in menopause, I expect that hormones will somehow “level off” and I will be migraine-free again. Well, I am still having attacks and still trying to figure out what triggers them.
I learn about foods and the elimination diet, and then a study comes out saying foods may actually have little to do with migraine. I’ve tried many medications and supplements and learned about the stacking factor — that one trigger might not get you, but add a few more and the fifth one on the list might. I lose count. I read about new potentially effective medications, new studies on various neuronal or cellular activities and their impact on our nervous systems and become hopeful.
And then I ask: so after all these years, why don’t we know? That is frustrating. And even while it’s encouraging that there are many new theories and studies and potential treatments, it’s also more frustrating. Oh boy, now which of these applies to or might help me?
At some point along the way, I took some advice I heard and stopped thinking about the possible causes/triggers, just accepted that I have migraine, period, tried to look at any bright side of it — like making wonderful connections and friends around the world or the fact that I was the sensitive one, the one who would wake up at sounds in the night and be able to warn others of danger. I hoped that acceptance would help me relax and perhaps that would improve my situation. Maybe I relaxed a little about them, but I still had/have migraines.
Menopause has helped some. My migraines are a little less intense and no vomiting, but they are still painful, disruptive, sometimes debilitating, and always limiting in some way.
And trying to answer the why of it all and to identify triggers for my attacks — that still frustrates me the most about my life with migraine.
This post is part of the April 2011 Headache & Migraine Disease Blog Carnival, hosted this month at Somebody Heal Me.