Distinguishing ‘Suicide Headache’ From Migraine

This transcript has been edited for clarity. Indu Subramanian, MD: Hi. Welcome, everyone, to Medscape. We’re so excited to have you here, and I’m very excited to have my friend and colleague, and former residency program director, Professor Andrew Charles, with us today. Welcome, Andy.Andrew C. Charles, MD: Thanks very much. Good to be with you, Indu.Cluster Headache Devastating and Underdiagnosed Subramanian: My name is Indu Subramanian. I’m joining you from UCLA, which is where Andy also works. We’re excited to talk today about cluster headache. It’s one of the lesser-known headaches. Andy, maybe you could tell us a little bit about this type of headache. I’ve just been so fascinated by how underdiagnosed this is and how devastating it can be for the person suffering.Charles: It is indeed underdiagnosed. Very often, it takes people months and months to get a diagnosis. It’s thought of as a rare disorder, but it’s not that rare. About 1 in 1000 people have cluster headache. Its presentation is somewhat like migraine, but in many ways very different, with some really unusual features.It’s called “cluster headache” because it tends to occur in clusters. It happens every single day or every other day for weeks or months at a stretch, and then it goes into remission, and it doesn’t happen at all until often, interestingly, the same time of year the following year. This distinctive seasonal timing is one of its features. The other is that it very typically happens at the same time of day, typically around bedtime. Some people can set their watch by when it’s going to happen every day. There’s this clearly circadian day-night cycle feature that’s very interesting, and we still don’t have any clear understanding of what it is. We think that it might tell us something about the changes in the brain during sleep and wakefulnessThe ‘Suicide Headache’ Brings Agitation Subramanian: Very interesting. Could you tell us a little bit more about how these patients present? What is the quality of the pain? How can we tell it apart from other types of headaches?Charles: That’s another important thing to consider. Again, some of the features are migraine-like. It’s an excruciating headache, described by patients as the worst pain they’ve ever experienced. It’s known as a suicide headache, in part because of the severity of pain, but in part because of this very interesting phenomenon of agitation that happens with it.Whereas people with migraine tend to lie still in a dark, quiet room, patients with cluster headache pace, bang their heads, or scream. They do all these things that migraine patients don’t do as part of their cluster attacks. That sort of agitation is really a hallmark. One way of distinguishing cluster from migraine is you ask, “What do you do when you get one?” If somebody says they pace around and bang their head, that’s usually going to be cluster. That sort of agitation is also part, we think, of what causes patients to think about harming themselves during the attacks — because again, it’s not just the excruciating pain, but this sort of emotional agitation that goes along with it. The pain is typically in the eye or somewhere around the eye. It’s called a trigeminal autonomic cephalalgia because it’s associated with cranial autonomic symptoms. Redness and tearing of the eye, runny nose, and drooping eyelid are the most common ones. Basically, anytime you have a headache that’s around the eye, that happens at the same time of day every day for some period of time, and that’s more common in men than women, those sorts of features are what really set cluster headache apart from migraine.New York Times Author and Cluster Headache Patient Subramanian: Wow. It’s not that uncommon, you said?Charles: Well, 1 in 1000, so that sounds rare, but we see it all the time in headache clinics. It’s probably more common than that, in fact, because it’s just getting misdiagnosed as migraine. There are some very specific treatments that are different from migraine, so it’s very important to make an appropriate diagnosis because you can really end up much more effectively treating patients if you diagnose it appropriately.Subramanian: I love the book The Headache: The Science of a Most Confounding Affliction that you were featured in by our friend, the amazing New York Times author who wrote about this whole area. Could you tell us about that book?Charles: Tom Zeller, Jr, is, as you mentioned, a New York Times writer, and as he identifies in the book, he’s a cluster headache patient. He describes in great detail his own experience with cluster and also his frustrations with achieving an appropriate diagnosis, with treatment, and with the fact that very little attention has been paid to cluster headache in terms of funding or research to try and identify its cause.Subramanian: It’s a beautiful book, and a must-read I would say for many of us neurologists who are seeing some of these folks. Thank you so much, Andy. It’s been amazingly educational. Charles: My pleasure.Subramanian: See you, everyone.