Migraine Guided Visualization, my latest post on Migraine.com, walks non-migraineurs through the symptoms of the pain phase of a migraine. What would you add to this “guided visualization”?
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?
“C’mon, you don’t feel that bad,” I told myself upon realizing I was slumped over the coffee table with my head resting on my arm. My next thought was “Oh, wait. Maybe I do.” What an exciting moment to realize I was listening to my body.
A couple years ago I conceded that if I find myself sitting on the kitchen floor, I probably feel too bad to be cooking or cleaning. Or if I’m resting on the couch and discover I’m in the fetal position, the migraine is probably pretty bad. Instead of shrugging off my body’s cues as melodramatic, I finally see that unconsciously engaging in pain-soothing behaviors is a good indication I’m in bad shape.
I have long done so much on a good day, trying to take advantage of it, that I push myself into days of sheer exhaustion and severe migraines. That hasn’t been happening so much in the last year. Perhaps this is a sign that I’m paying attention when my body tells me to stop.
How does your body tell you it’s time to rest?
The five-day migraine let up! I’d like to be celebrating by cleaning the bathroom, but am instead still idle, waiting for the migraine hangover to pass. I’m sluggish, vaguely headachey and spacey while my body sorts itself after the “extreme neurologic disruption” (I just love that phrase) of a migraine episode. Though the symptoms vary from person to person, anyone who has had a migraine know exactly what I’m talking about (as evidenced by the 120+ comments on an earlier post). What are your migraine hangover symptoms?
Multiple times a day I wonder if how I feel at a given moment is depression- or migraine-related. I keep concluding that I’m not, but I’m asking myself more than ever and have to wonder if that’s a sign that I am clinically depressed.
I was first diagnosed with depression when I was about 15. I took Prozac for a couple months then didn’t take anything until I was in college. I’ve been on antidepressants more often than not in the last 10 years. They usually keep things under control, but I’ve had multiple backslides. These are major falls off the mountain not small slips.
I’ve been taking Wellbutrin and Cymbalta for three years and added Lamictal six months after starting the first two. I check in with my psychiatrist (whom I love) every three to six months and we play around with meds as necessary. In Octoberwe increased my Lamictal dose from 200 mg to 300 mg. It didn’t seem to be working so we went back to 200 mg on March 8. As I write this, I’m thinking that maybe it was working. . . .
What’s Going on Now
I’ve been hiding out all winter, but didn’t start feeling sorry for myself until recently. Except for the weekend thing (which really don’t feel like depression), I haven’t cried much. I have felt overwhelmed, tired and just generally blah for the last couple weeks. Not to mention that my e-mail inbox is nearly overflowing and even the shortest blog posts are taking me hours to write. I was blaming it on migraine, but the signs are adding up.
That Was Easy: I Am Depressed!
As I write, I’ve become almost positive I’m depressed. Having online depression screening tests rating my symptoms as moderate to severe is a pretty good clue too.
It takes me a long time to find a cocktail of meds that’s effective. Once I do, drugs have always been quite helpful for me until I hit a backslide. I’ve considered therapy off and on. Trying to find a good therapist is such a pain. In fact, I’ve never found one I liked. Also, three standing appointments each week is my limit.
When I mentioned my mindfulness-based wellness class and meditation, my psychiatrist pulled a related book out of his bag: The Mindful Way Through Depression. One of the authors, Jon Kabat-Zinn, also wrote the book we’re using for class, Full Catastrophe Living. I read a fair amount of both before reading started triggering nausea and dizziness last week.
I really like what the depression book has to say. Particularly about the role of negative thoughts or self-talk in perpetuating depression. I seriously didn’t realize that other people don’t do that all the time. It has been normal for me for years, perhaps forever.
After Hart suggested that I beat myself up every time I let myself down, I’ve become much more aware of my thoughts. I’ve already progressed in noticing — and halting — the negative things I tell myself. There’s a lot of room for improvement, but it feels good to know I’ve already started what I’m trying to do.
Ironically, inability to concentrate is one of my major symptoms. It also makes learning to meditate highly frustrating. The meditation class I’m taking has taught me to not get upset with myself for “not doing it right.” I’m not as wound up about it as I normally would be and am even sticking with a daily practice.
For now I’m hanging in there. I’m trying to not be so hard on myself. I’m even giving myself permission to watch movies when I need to escape. I also stopped writing this mid-post so I could call my psychiatrist. I hope he’ll adjust my meds over the phone, but will make an appointment if I need to.
When I sat at my computer this morning, I had no idea all this would come gushing out. In fact I started out to write a short forum post about differentiating between depression and migraine symptoms. Amazing how helpful “talking” it through is.
What’s your experience with depression? Please share it in the comments below.