What it's like to live with the searing pain of cluster headaches

Aug 1, 2016 at 8:00 a.m. ET
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Here's something I hate to admit: I have a condition nicknamed "suicide headaches." The real name is cluster headaches, but I like to think of my suicide headaches as Voldemort, aka He-Who-Must-Not-Be-Named. When I was first diagnosed with cluster headaches, the main image on its Wikipedia entry was of a little man attacking a skull in some sort of medieval illustration of what the pain feels like. I miss that little guy.

Cluster headaches are more common in men (not me) and heavy smokers (not me) and tends to start in your 20s (not me). I hate to be dramatic — just kidding, I love to be dramatic — but if every diagnosis carries an element of "why me" along with it, this one is especially confusing.

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As far as Clusterheads go — yes, there's a nickname and yes, there's a message board — I consider myself lucky. My headaches last for 40 minutes. On my worst days, I get 10 per day. That means about 40 percent of my day is spent in headache mode, 30 percent is spent worrying about my next headache and 30 percent is sleeping — which isn't the restful escape you're imagining. Cluster headache sufferers often wake up in the middle of the night in pain. I can tell I'm having a bad week when the first thing I feel in the morning is a searing pain over my right eye.

After six years with pain that has been described as worse than childbirth, I probably still haven't accepted the real role that my headaches play in my life. Once a bout of headaches hits, it takes a few days for me to notice a shift. I'll snap at family and friends for days, decide to cancel plans and skip meals before a lightbulb moment — I'm cranky, and I deserve to be because I'm in physical pain.

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Six years after my diagnosis and living in a major city, I still can't seem to find the right doctor. I've sought out the most prestigious doctors who focus on headaches. Thus far, that has meant men. I've left feeling badgered about whether I'm planning to become pregnant, my choice of birth control, and how I manage my stress levels. These are all necessary questions when choosing medication and deciding on a treatment plan, but there must be a loss of bedside manner that comes with success. I accept blame too. I could try harder to find a doctor I adore. But my medication works well enough, and I'm superstitious about shifting the status quo.

I've been told by doctors and well-meaning friends to do yoga, go vegan, eat more protein, eat more chocolate, eat less chocolate, give up alcohol, monitor my sleep, get a less stressful job, go on hormones. I've been told that I'm probably causing the pain myself because I'm too stressed and anxious. I've been told, simply, "I'm so, so sorry." I've been recommended every illegal drug under the sun.

I broke up with a boyfriend because he couldn't handle watching me in pain. My current boyfriend knows the drill. Ask me once if he can do anything, wait for me to say no and leave me to handle it myself. I'm so happy that the online support groups exist because I know how much pain is out there, waiting for me.

And it is waiting for me — on a bad week. Right now, we're all clear.

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