Andrew Levy, 49, remembers a time when he was around six years old and saw “motes dancing in front of [his] eyes.” The New Jersey native didn’t think anything of the sensation at the time, but as he grew older he recognized those motes as auras preceding migraines. Sunlight seemed to trigger auras (such as partial blindness) in his early 20s and 30s, and he began to experience headaches. But it wasn’t until 2006, when Levy experienced four months of steady headaches, that he sought medical attention.
In 2009, Levy, the Cooper chair of English at Butler University in Indianapolis, Ind., released a book documenting his experience with migraines titled A Brain Wider Than the Sky: A Migraine Diary. The book received rave reviews thanks to its delicate prose and well-researched view of the history of migraine. Levy recently spoke with Head Wise to discuss his experience with migraine, how he copes and why modern culture still stigmatizes the pain.
Head Wise (HW): Why did you decide to write your book and share your story with others?
Levy: So many migraineurs muddle their way through, and I think it is totally unnecessary to do so. I felt that I was in a position to honestly admit that I had migraines and to talk about them and describe them in some detail that might help people. It was liberating to write about pain, to take control of it in that way, to beat it in that way.
HW: Do you have a known family history of migraine?
Levy: Not on my father’s side, but my mother did experience migraine events and headaches so bad she needed to throw up. We think my grandmother experienced them, too. Back then she would close the door and disappear for hours at a time. Our guess is that she was experiencing migraines.
HW: How did you cope with migraines at first and how has that coping changed over the years?
Levy: Back in my 20s and 30s, I really didn’t do much. They were pretty infrequent, so I would take medication and they would go away. In 2006 when I realized I was having migraines, I changed my lifestyle, my diet, tried different medications and went to the doctor.
I got a CT scan to see if it wasn’t something more serious and then started taking Topamax®, an anti-epileptic drug. I would take it every day, but it gave me awful side effects. So I stopped taking it, cut my intake of caffeine and alcohol, and started taking sumatriptan.
HW: How do migraines affect your daily life?
Levy: They are a complete and total irritant; but the pain does make moments of productivity more precious. When it is 6 a.m. and I see weird stuff forming in front of my eyes, it is completely frustrating. The best case scenario is I take a pill right away and I’m OK by 8 a.m. and feeling good by noon.
If the migraine comes on for four or five days, I start to feel intense depression. After three or four days, I get acclimated to the feeling and that acclimation is pretty depressing.
HW: In your book, you put somewhat of a positive spin on migraine, writing that the pain “compels you to eat better and sleep regularly...and can be seen as God’s early warning system.” How did you come to this conclusion?
Levy: I see migraine as a smoke alarm that goes off when your toast is burning a little bit. It is loud and blaring, but it is telling you something. It would be great if your brain sent you more subtle signals to eat better and drink less and have less stress in your life. It would be great if it just gave you a gentle poke, but instead it gives you this massive punch in the side of the face. The pain has forced me to improve my life, to eat fewer sweets and drink less, and those are good things.
HW: In your book you attribute the onset of your migraines to the weather in the Midwest. Have you ever thought about moving to help your condition?
Levy: No. Whenever I go on vacation, I pay close attention to see if the weather is helping or hindering, but it turns out that barometric pressure in Ireland can be a trigger for me, as can a sunset in San Diego.
HW: In your book, you run through the history of migraine. What made you want to explore that history?
Levy: I found a lot of comfort in learning that famous people from the past lived with migraine. Before researching for the book, I didn’t know Thomas Jefferson had them. I didn’t know Sigmund Freud had a lot of them and was going to become a migraine specialist before he was the first true psychotherapist. In many ways, finding these profiles of people who were coping and being productive was really powerful to me.
It was also powerful to discover that there were 3,000-year-old reports of migraine. It made me feel like I was part of something deeper.
HW: You also write about evolution and the idea that modern environments are not suited for persons with migraines. What do you believe to be the tie between migraine and evolution?
Levy: Migraine is a disease often triggered by flashing light and there is much more of that in the contemporary world than 500 to 600 years ago. In the book, I suggest that for me, migraines precede storms. So if you think of someone 2,000 years ago, get- ting a message in their head that they needed to seek shelter at a time when it really mattered made total evolutionary sense. Today we don’t need to hide from weather anymore, but it still seems to me that the warning system will remain until we find a really good cure for migraine.
HW: One in 10 people experiences migraines. If so many people experience them, why do you think the disease is often stigmatized as “just a headache”?
Levy: I think migraine is still stigmatized in part because it’s been metaphorized; people will say “you are giving me a migraine.” That aggravates real migraineurs.
Also, outside of rushing yourself into an MRI machine and having your head tested, evidence of a migraine is really on one’s own testimony. And because the condition takes place inside your head, people associate it with psychosomatic moments. People think it is just stress and you can handle it.
In many ways, people stopped thinking of headaches as an actual disease needing real treatment a long time ago. If you go through 19th century literature, the number of female characters who have a headache that men dismiss or don’t take seriously is just massive. There is still that stigma that women with migraine fake head pain to get out of housework, to get out of sexual obligations. It is very Victorian, but that thinking is still there.
HW: Do you think the stigma is going away at all?
Levy: I think the last 10 to 20 years has been going in that direction, but I still think there is a ton of work to do. Headaches are still the number one cause of lost sick days in the United States. But it is encouraging to see a lot more celebrities describing themselves as having headaches. You also see more athletes being scratched from athletic events for migraine, men and women, a fact that I find fascinating. Given the machismo that is a serious part of our sporting culture, that is pretty telling.
HW: What message would you like to give to those that suffer from migraines?
Levy: If you have any kind of headache or neurological disruption cutting into your life, go to your doctor right away. If you can’t find the advice you need, go to a headache specialist even if the office is 300 miles away. Don’t be ashamed to tell doctors what you have and how you experience it. Try not to feel any shame about it in terms of family and work. Have the conversation on the outside, not just internally with yourself.
Looking for more information about the history of headache and migraine? Read Headache Through the Ages by Seymour Diamond, MD, and Mary A. Franklin.
