As my birthday present, my husband recently took me to Munich for a few days.
What did I do for one of the three days? You guessed it: I lay in bed with a terrible migraine, silently praying for the pain to end and for housekeeping to leave us alone. Fortunately, we still had a few days to see the city, but it was still not fun to miss a day.
If you have Narcolepsy and get migraines or headaches, welcome to the club. It turns out, you’re not the only one.
According to one study done in Germany, Narcoleptics get headaches and migraines far more frequently than non-Narcoleptics.
Having interviewed 68 patients with Narcolepsy for headache symptoms, the study found that a whopping 81% of participants reported headaches that fit the diagnostic profile and 54% of the patients had the profile for migraine (64% women, 35% men). That is much much higher than stats for the general population.
Even stranger, though, was the finding of another study that said that on average a Narcoleptic who gets migraines or headaches will start to get them about a decade after they first started showing Narcolepsy symptoms. As one article points out, this suggests that there is some connection between migraines in Narcoleptics and having Narcolepsy. This was news to me.
Skeptical (it does sound a bit strange), I did the math myself, and was shocked to discover that I fit the ‘migraines after a decade’ theory almost exactly: I started getting migraines about 10 years after first showing symptoms of Narcolepsy.
Years later, although I still can’t imagine why Narcoleptics would get headaches 10 years after getting Narcolepsy, I have come up with a theory on why they might get more headaches and migraines than the average American.
My hypothesis is simple: I think the “migraine threshold,” or the number of “triggers” that must build up before one gets a migraine, is simply lower in Narcoleptics because we don’t get enough refreshing sleep (or because of the EDS that is part of Narcolepsy). In other words, it may take fewer migraine triggers (such as food, stress, or the weather) for a Narcoleptic to get a migraine, compared to someone in the same situation who doesn’t have Narcolepsy.
I recently read a book on migraines called Heal Your Headache, whose basic premise is this idea of the migraine threshold. The book then goes on to detail the ways you can raise your threshold so you no longer get migraines (higher threshold = less likely to get migraines). In the book, Buchholz, the author, explains at one point that your sleep habits (and especially how much sleep you get each night) can be a migraine trigger, lowering your threshold and potentially making you more likely to get a headache. Apparently not getting enough sleep is a migraine trigger for some people.
When I read this book, I thought to myself: well, not getting enough sleep isn’t my problem. I always get at least 8 hours at night!
But today it occurred to me that this (the number of hours I sleep) is besides the point: sure, a Narcoleptic might get what should be ‘enough’ sleep at night, but the quality of that sleep is going to be relatively low, leaving them still tired after the recommended number of hours. Regardless of their nighttime sleep, a Narcoleptic is going to be tired during the day.
Put simply, one way to look at things would be to say that Narcolepsy (like lack of sleep for the average person) itself is a trigger that lowers one’s migraine threshold, resulting in more Narcoleptics getting migraines and headaches.
I’m not a doctor or a researcher, but I think this makes sense.
The good news is that this book details ways you can lower your threshold, including the migraine elimination diet that has made the book famous. I am still trying this diet, which is quite restrictive, but I can say that since I’ve been on it I’ve gone from having at least one migraine a week (sometimes for multiple days) to only getting them maybe twice a month. I’m hoping that if I start following it more strictly, I’ll finally stop getting headaches all together :-).
What about you? Do you also get migraines or headaches? How long have you had them and how do you deal with them?