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Showing Others What a Migraine Attack is Really Like

Migraine Awareness Month Blogging Challenge #26: “From the Outside Looking In” — Write about what you think your family, friends and others think a day in life, a day with migraine disease is like.

This is the perfect time for me to reflect on what my life with migraine looks like to others. I’ve just returned from a long weekend in Minnesota, where Hart and I traveled for a wedding and to visit dear friends and family—many of his college friends, his sister, our closest friends from Seattle and my best friend from college. I spent much of the weekend in bed, though I made it out most evenings and managed to see everyone except my best friend from college. What was unique about this trip is that I was stuck in bed even though the pain never got above a level 6.

(Background: The longer people have known me, the less I have let them see how disabled I am. Counterintuitive, I know, but it has only been in the last three years that I’ve really let people see how sick I am. And by “people,” I mean everyone, including Hart. Including myself. There are many reasons for this, but two rise to the top of the list. First, I deluded myself into thinking I wasn’t as sick as I am by hiding from myself how debilitating the migraine attacks are. It was as if admitting how sick I was would somehow make it harder to improve my health. That if I couldn’t push through the attacks as I did for so many years, then something was really wrong with me. Also, I was ashamed of being sick and couldn’t shake the feeling that I was faking it. If being sick was a mindset, as I have so often been told, wasn’t my inability to get better a sign of weakness? Besides, how could a headache make me feel faint, weak and dizzy and make my knees buckle?)

I think most people I know understand that I am in terrible pain during most migraine attacks. I have been much more open about that aspect of the migraines in recent years and even began sharing my pain ratings. They also recognize the burden of nausea, because it is a relatable symptom, and photophobia, because I always wear TheraSpecs migraine glasses. [disclosure: I’m the co-owner of TheraSpecs]

I’m not so up-front about the less tangible autonomic symptoms—they are more difficult to describe and, even now, I’m still skeptical of their validity. Thursday night I was at the science museum with friends when my knees began to buckle and I thought, “Come on. Is this migraine really so bad that I can’t even stand up?” Yes. The answer is YES. Even I, a so-called patient advocate and the one experiencing the symptoms, could hardly believe it.

My college friend and I were scheduled to spend Friday together. It took me 30 minutes to gather enough strength to get out of bed. As soon as I did, my knees began buckling. I literally could not stand up. We rescheduled for Saturday. I awoke Saturday completely exhausted and nauseated, so I rescheduled for Sunday. Sunday I was so weak that I couldn’t even get out of bed. So I didn’t get to see my friend at all. The guilt is tremendous, especially because I still feel like I’m making up for being too sick to fly to go to her wedding three years ago. Also because I find it difficult to believe that the non-pain symptoms of migraine can be so bad that they keep me bedridden.

I’ve been struggling with this the last few months, actually. Even though I intellectually know better, I still tend to think of pain as the primary component of migraine. Since the pain has let up some since starting magnesium and, more recently, beginning to take Amerge at bedtime to reduce the severity of my middle-of-the-night migraine attacks, the autonomic symptoms have been more prominent. I assume they’ve always been present to the same degree, but pain overshadowed them. I can hardly grasp the impact of these symptoms myself—there’s no way I can expect my friends and family to understand them.

To answer the question, my friends and family probably think a day in the life with migraine is full of pull-your-hair-out pain, gut-wrenching nausea and recoiling from light. Some days are like that, though I’ve had far fewer of those in the last six months than the previous 10 years. Other days I physically feel like I have the flu and spend the day reading. Since I adore reading and migraine kept me from doing it for four years, those days aren’t too bad. Cancelling plans is particularly frustrating, though, because I think I should feel well enough to go out if I’m not in horrendous pain. (Should. Now that’s a word I’d like to strike from my vocabulary.)

These are just descriptions of my migraine days. There are similarities among migraineurs, but we’re all different. What are your migraine days like? Do your friends, family and coworkers see them as they really are or do you put on your game face?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

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Are These Pre-migraine (Prodrome) Symptoms?

Dizziness, tremor, hot flashes, fatigue, cold hands and feet, mental fogginess, nausea, increased pulse. I was excited to discover this cluster of symptoms and thought them to be warning signs, also called prodrome, that a migraine was coming on. The earlier a migraine is detected, the earlier it can be treated, thus increasing the likelihood it can be aborted altogether. At least a dozen times, I took a triptan when I recognized these symptoms coming on and avoided the migraine pain completely. I’d feel funky for an hour or two, then feel much better. Yay for triptans, or so I thought.

Grocery shopping one day, the symptoms hit and I didn’t think to take a triptan. The symptoms were so severe that my cart functioned as a walker. I felt awful when I got to the car and knew I should go home. But I really, really, really wanted to go to Goodwill.

I pushed through, risking worsening the migraine. I put on a hat, sunglasses and earplugs to get through the store and my decision-making abilities were severely curtailed. Still, an hour passed and on my way home I felt better than I did before I went to the thrift store. So much better that I spent the afternoon cooking and cleaning.

I began experimenting with not taking a triptan when the symptoms hit. They still lasted for an hour or two and then lifted. Exactly the same pattern as when I medicated for migraine.

Are these migraine symptoms at all or is something else causing these flushes of autonomic distress? My doctor speculates medication side effects and I’m going off my antidepressants to see if that’s the case. I have to wonder if they are part of some other disorder, maybe adrenal or autonomic. Any ideas?