Cluster Headaches

[This post is part of my Medical Conditions Series.]

I suffer from Chronic Cluster Headaches.

Cluster headaches are the sadistic older brother of migraines. Like migraines, they are their own disease, not a symptom of something else. Think of migraines as a rebellious teenager, and clusters as migraine’s methodical, disciplined older brother that has gone through special military training to learn how to inflict pain. Migraines have lots of symptoms: in addition to the head pain, they cause nausea, noise and light sensitivity, auras, etc. In that way, they’re like the rebellious, moody teenager who acts out in all sorts of random destructive ways. And migraines (like teenagers) act out on an unpredictable schedule–you don’t know how long each migraine will last, or when the next one is coming.

But cluster headaches are different–they’re all about focused, scheduled, disciplined pain–none of that other stuff that migraines mess around with. Cluster headaches are professional, punctual, and polite: they show up at the same time every day, cause excruciating pain in one precise spot behind one eye, repeat for a few weeks, and then vanish until the next cycle which can be months or even years later (hence the name “clusters”). The pain is super concentrated–all the pain of a migraine and more–concentrated into one tiny spot. Doctors consider it the most painful condition known.

For most cluster sufferers, each individual cluster headache lasts from 45-90 minutes, and repeats at the same time every day (or multiple times a day) for a few weeks or months. Lucky me, my individual headaches last for 8-14 hours. While my headache clusters started off episodic as 2 week clusters with 4-6 month reprieves, over time the clusters got longer and longer and the reprieves shorter and shorter until I became chronic. Now I get 1-2 attacks a day, every day, with maybe 1 day a month off if I’m lucky.

Luckily my cluster headaches are not as intense as some other sufferers. My worst attacks have only gotten to an 8 (hyperventilating in the fetal position) on the cluster scale (where 9 is catatonic, and 10 is suicidal). Overall, the intensity of each cycle has gotten less intense as the cluster cycles have gotten longer, as if they’re following some weird conservation of pain principle. Now that I’m chronic and have them every day, they are typically only in the 3-5 range (women who have given birth say that a 5 is roughly the same pain as labor).

Fortunately, I’m pretty responsive to treatment. I take Namenda and high doses of Vitamin D help decrease the intensity and frequency of the cluster headaches. I also use high-flow Oxygen and caffeine as abortives for high intensity and low intensity hits respectively, with Imitrex injections as a backup for any hits that get through.

2 responses to “Cluster Headaches”

  1. So sorry that you have to deal with this. I feel a small portion of your pain (migraines bi-yearly) but can’t imagine dealing with this daily for days on end. Thanks for being open to sharing your experience.

  2. I don’t know the difference between cluster and migraine headaches before I read this article. Thank you for explaining them. You are a good writer–able to explain complex things to simple folks like me. I have not experienced any headache myself so I can not say I know how you feel or “I feel your pain” as President Bill Clinton used to say. All I can say is I love you.