'A Brain Wider Than the Sky' author talks about life with migraines

Migraine headaches affect more than 1 in 10  Americans. Yet they are poorly understood.

In his new memoir, "A Brain Wider Than the Sky: A Migraine Diary," Andrew Levy writes about his pain and attempts to give it a description. He also searches for meaning in the migraine, asking: Why is this happening? What is causing it?

The author also explores the cultural meaning of the migraine headache. Part meditation on pain, part day-to-day recording of his family life, the book covers both the metaphysical and the momentary. 

Here is what Levy had to say about his latest book:

LAT: Describe what the moment was like when you decided to keep track of your headaches in diary form. You write: “There is a kind of martial arts that requires its practitioners to mimic the attacks of the enemy in order to defeat the enemy. Maybe there is a kind of writing like that too.”

Levy: That's a great question. I think that your first instinct is to run or turn away from the pain. But then for me, there was that bit about Jefferson who had a report about weights and measurements due to Congress. And he pushes through the pain, and perseveres.

[Levy also mentions in the book that Thomas Jefferson's migraines had the same pattern as his.]

Jefferson was a huge inspiration. I figured: Let's apply myself intellectually here. In a lot of ways, it was the most fun I've had writing.

LAT: In the introduction you describe a self-medicating routine of steam, tea, ice pack. Or in a different order ice, tea, then steam. How did you find this combination worked for you? Had you tried everything else at that point?

Levy: I think a long time ago I took a hot shower and I found that it worked. The ice pack is kind of intuitive because your head can feel hot. It was only when I was doing the book that I discovered that there are actually ancient cures.

LAT: You describe special healing from your little son. You write: “He is like Ahab, I think, and my head is the whale.” Can you talk about that a bit?

Levy: It's kind of like all he wants is to play. All he really wants is a father who is ready to play. If he saw me with pillows around my head, he began to learn to see these as contra-indicators for fun. He'd very often jump on my head or my shoulders to try to get the headache out. I'd think: Okay, we still have joy here. When he was very little he completely wrapped himself around my head and it actually helped, and I have never forgotten that.

LAT: You’re an English professor at Butler University. That seems to involve a lot of reading, a lot of light. How did the migraines affect your work?

Levy: This goes way back. There have been times when I was in the classroom and I have gotten an aura. And you just keep teaching. There are a lot of people out there faking it. Sitting through meetings. I just kind of muddled through.

LAT: Migraines are 50% more prevalent than depression. Twice as prevalent as osteoarthritis. Three times as prevalent as diabetes. And 15 times more prevalent than rheumatoid arthritis. When you learned these numbers was that surprising to you? What do you think average Americans are doing to cope?

Levy: It is incredibly surprising to me. In the chapter "Migraine Parties," I found that there's someone everywhere you go, who has migraines too. It was like: Holy cow! There's an epidemic right under the surface. It seems like a colossal mistake that more attention isn't given to this.  

Many people, who should know better, are just thinking: Oh, I just have a headache. And they are sitting there with a cup of coffee.

LAT: You write: “What separates a migraine from other chronic illnesses, I believe, is that a migraine constitutes a metaphysical crisis.” What is the metaphysical crisis you describe?

Levy: Yeah, I think the problem in part is that it's a headache. Culturally, headaches are not regarded as a real disease. It is not like other diseases where you got to the doctor and get a test. The only person who can tell you you are having a migraine is yourself.

On the other hand, it feels like there's no source. You didn't do anything to make this happen. It could be a sliver of light in the morning. A bit of strobe lighting from ESPN. A chocolate bar. It's an invader that comes and then goes.

LAT: What were/are your migraine triggers?

Levy: Weather is still No. 1. Barometric pressure changes. If a storm is coming, clouds are gathering over -- that's my best migraine day. A storm outside, a storm inside.

LAT: At one point, you say: “There’s no vocabulary for monotonous pain.” Was it difficult to write your pain down at times?

Levy: Yeah, I hate to say it, but that's why I wrote that. Writing about it is a lot like biofeedback or acupuncture. Making the migraine your friend is cathartic and helpful.

LAT: You read Buddha, the Bible, and Emily Dickinson. While dissecting these texts were you searching for answers? Or trying to get your mind off the migraines? Or, in a way, did reading these texts and this poetry serve as a form of praying? Healing?

Levy: I should have gone to the doctor. That was the long way round. But I don't regret it. For me, that's how I sought comfort. Buddha is all about treating pain. I was able to read the texts with new eyes.

LAT: What’s a “migraine party”?

Levy: You go to a party and there's 10 to 12 people there. And you start to talk about migraines and soon enough three or four people are talking about their migraines too. They are parties that were not meant to be migraine parties to begin with, but someone starts talking about it, and once you do, the door is wide open.

LAT: Where do your migraines stand now? And how are you currently coping?

Levy: I'm doing pretty good. They come in little bouts right now -- change of season in spring, change of season in fall. Once I recognize a migraine coming earlier in the day, it helps. I also take Sumatriptan. It may be the only drug invented to specifically treat migraines. 

--Lori Kozlowski

Photos courtesy of Simon & Schuster

Comments

[Paul186]

I've had 'em since I was a kid-I'm 59 now. It was most severe till
about 18yrs. old. It would lay me out for a day with puking.
Now, I'm overjoyed. They come and go and I'm able to get
on with it, without the devastating loss of energy. It's a temporary
psychedelic trip. It does mess up my vision for a good 30-60 min.,
so good thing I'm not a surgeon or commercial airplane pilot.
Life is great and the migraines are minor-whew.

[Paul]

I've had migraines since I was 17....I'm now 36.....10 minutes of aura, an hour of blindness, and then 24hrs of searing pain and uncontrollable vomiting. A migraine once put me in hospital for four days.... If I'd had access to firearms at the time I would definitely not be alive now.

About 10 years ago I discovered that cannabis stopped the nausea and vomiting instantly, and allowed me to keep painkillers down long enough for them to take effect. Reading and mathematics is still out of the question, and I can't drive, but I can go about most of my business without too much difficulty.

Ironically enough I'm a visual artist now, and I think that the effects of migraine have had a big impact on my work - particularly the distortions and holes in the visual field that come with the aura. Now that I've discovered how to control the vomiting, migraine is a minor inconvenience rather than a total disability.

[Dana]

I've suffered with migraines since I was 6 - similar pattern of being decked for a day
Mine seem to occur with most frequency in spring time
and during periods of intense solar flare activity. I've been tracking the pattern
since I first noticed it during Solar Cycle 21 in 1979 and realized that
when I was 6 it was Cycle 19 which was a real active cycle...
Best stuff I've found for control is Maxalt.
Sure wish there was a 100% cure...

[Jenn]

Mr. Levy is brilliant at putting into words what many of us feel. I, too, suffer migraines, especially with weather changes. When I first sought treatment my respect level for doctors was fairly decent. After 5 years of being told it was all in my head, no pun intended, I realized I was on my own.

Perhaps that's one reason for this silent epidemic. Healthcare professionals, by and large, are unresponsive and undereducated when confronted by a migraine sufferer.

If the physicians I saw wanted to surgically remove their heads because of the pain of a migraine, I promise you, they'd figure out a way to rectify the situation.

[Donald]

I'm 57 years old and have been suffering with them from about age 30. Recently my doctor discovered that I had abnormally low testosterone. He put me on a daily gel and my headaches are much less frequent and less painful. 10% of all men have low testosterone and only 1% ever have it diagnosed. Have your level checked, it might help.

[Richard]

I began Migraining at around 15 and by my college years they were so common my life became hell. That's when I began chronicling them and 40 years later I still keep a daily 'Page a Day' diary. At 36 they suddenly abated and I was able to resume eating and drinking what I liked. I've had an occasional Migraine maybe once or twice in 20 years-but pretty mild. I think my 20's were shaped by the pain and uncertainty of their unpredictable onset-how I would cope in social situations where I couldn't curl up in a ball, and can definitely relate to the suicidal thoughts comment. Now my college age son seems to be getting them...

[Scott]

Interestingly enough, sometimes migraine symptoms are not from true migraines. I work with a company that does soft tissue diagnosis (full disclosure here) and one of the interesting things we've seen is that during intake questioning, many patients present with migraines as one of their "additional" complaints but the results of testing actually show no pathology of migraines but rather that they have muscular conditions that trigger debilitating migraine-like attacks. Targeted therapy often reduces or even eradicates the attacks.

We used an ex-girlfriend of mine as a demonstration subject a few months ago and found that her migraines of the last decade were caused by a neck muscle condition. She would be vomiting and incapacitated for days at a time, but now targeted treatment has almost eliminated her issues and she's off the horrible drugs.

Obviously there are true migraines and by no means am I discounting the pain they cause, but just want to make the point that even people who are 'sure' it's a migraine may really have something else triggering the attacks.

www.insightdx.com is the website if you want to read about what we do. Feel free to send an email to that site if you have any questions.

[Catharine Phillips]

After reading everyone's comments about weather-triggered migraines, I now know I am not the only one who feels sick when the barometric pressure drops. I've never followed sun spot trends as to how they might relate to my migraines. That's an interesting theory! Twinkle-vision, double vision, auras and then nausea will last for three to four days. A heating pad on my forehead seems to be the only thing that will help ease the pain enough so I can sleep.

[Gary Knickerbocker]

Some of my earliest memories are of my mother putting hot rags on my head at the age of 6. Now at 62 migraines have been my one constant through life and as a male I was always taught to not complain. After suffering a migraine induced stroke and spending two days in the ICU I needed to do something to help prevent the next occurrence. Unfortunately I suffered another severe migraine attack during which I vomited for 8+ hours before discovery gabapentin taken as a daily prophylactic. The dose has been increased twice in the three years I've been taking the drug but I have had no reoccurrence of the life threatening migraines I previously suffered from. I still have the "normal headache which I can deal with.

[John MacPherson]

I have been getting since I was about 13. I am now 64. Many doctors think you are just faking and want drugs. I have been given drugs that change my peersionality. One my wife called bastard pills as that is what it turned me into. I found that the headaches are not as bad as I get older. I also found that a if I don't get enough sleep and hold to a set pattern I get more and worse headaches.

[donna]

Just this past weekend I had a migraine. I feel the pain coming on from from neck through my ear up the side of my face and into my eye. Always seems to come on the same side and same side affects. I have been having these attacks for almost 30 years. The weather as some have said does play into the headache but also the lack of rest, something I ate a couple of days before the attack. I watch my diet yet some how they creep up and attack. I am bedridden for 48 hours and like clock work the pain goes away. I do have some very unusual dreams almost psychedelic in nature. Its a pain somewhat to childbirth as it is constant and as soon as the pain leaves you can't believe you ever could go through that pain again.

[Aminah]

I have suffered with this pain for as long as I can remember, actually ..probably 3 years old.. maybe younger. The "throw up headache" is what I told my Mom ..exploding head, puking everywhere, vertigo, all of it. I am 43 now.. and I still get these beasts. I have one now, in fact. I've had doctors tell me that it's stress, it's my husband, it's my diet (organic, preservative/artificial colors and flavors FREE.. mind you), it's light, it's sound, it's "all in my head" ..and so on. I've had scan after scan.. taken just about every single "triptan" that is on the market... even "preventatives" such as Inderol and Topamax (the former nearly killing me with low BP, the latter making me as "stupid" and dysfunctional as a door). Narcotics (the legal ones) don't phase this pain... only make it worse, once I regain consciousness. Acupuncture helps alleviate some of the pain, sometimes ...but our insurance doesn't cover it ..and I am not functional enough to hold a full time job that could support necessary treatments (and my husband is doing all he can with our budget, as it is). I'm photosensitive, sound/noise sensitive.. sensitive to barometric pressure changes ..food sensitive (hence my strict diet) ...and so on. I get aura ..blindness ..nausea ..etc. . I have an entire arsenal of meds to prevent the hormonal triggers that accompany my menstruation. And I am a chronic sufferer.

Short of "surgically removing my head" ..what is there?

[Arlene]

I saw a write-up on this book in Time Magazine. The subject matter jumped right out at me. I have not read it yet... but I already know that this is a book that I am going to be able to relate to. I cannot wait to get my hands on a copy.

Like a few others who commented, some of my earliest memories are of coming home from school at age 5 with a throbbing headache, taking a few baby aspirin, crawling into bed, and having my Mom bring me an ice pack. At age 56, not much has changed. There are still those nights I can barely make it home. I stumble in the door, grab the coffee and the ice pack (and whatever meds I happen to be on) and crawl into bed... reminding myself always to hang in there because "this too shall pass."

I used to read everything I could get my hands on. I knew the new medications that were available before my doctor did. At this point in my life, I've given up on any thoughts of a cure. There won't be one, and I know that. Whatever the fad of the day is... whatever "new" cure I think I've come up with (eliminating MSG, avoiding chocolate, trying some new medication)... I've learned that there is always another headache waiting around the corner.

I use a lot of cognitive behavioral therapy with clients in my work as a psychotherapist. This involves teaching people to think differently about their problems as a way of influencing emotional outcomes. I don't think it ever occurred to me to apply this to my migraines. I have already accepted that there will be no cure forthcoming. So maybe... it's time to embrace my headaches, accept them as part of my life, and learn to think differently about them. I am anxiously anticipating reading Mr. Levy's words of wisdom on all of this.