Canadians with Episodic Cluster Headache

Four plan members in their own powerful words explain episodic cluster headache - a devastating primary headache disorder - and the drilling pain that gives it the nickname “suicide headache.” One female and three males ranging in age from 27 to 53 from Ontario and Newfoundland and Labrador describe the impact it has had on each of them.

Episodic Cluster Headaches


Episodic cluster headache is characterized by the abrupt onset of attacks of severe to very severe pain on one side of the head. Left untreated, an attack may last from 15 minutes to three hours, and on average a cluster period may last from six to 12 weeks.

How would you describe a cluster headache?

  • Pain in my head centred around my eye area. Feels like an ice pick in my eye. Nausea, runny nose, watery eyes.
  • Very intense pain. People don’t understand—the human imagination can’t even go there.
  • Absolute terrible pain. My mood is very low. I realize why some people kill themselves because of it. I agonize, “Why me?” and “Why won’t this go away?”
  • A beast. Those who end themselves because of it— completely makes sense to me.

How has cluster headache affected your life?

  • If you have never had one, then you do not know the level of pain you can tolerate.
  • People think headache, migraine, it’s all the same. It’s not. They cause me anxiety. I cancel plans. They are socially limiting.
  • It’s like I live in a glass prison and others can’t see what I’m going through. I’m oppressed by it.
  • I’m always living with the fear of it coming back.

How has cluster headache affected your ability to work?

  • Very disruptive. It’s hard to schedule meetings. I may need to just get up and leave.
  • I can drag myself to work and do enough to keep my job.
  • It’s not conducive to being productive. After an episode, I’m exhausted, weak. I have to nap for up to two hours.
  • When they happen at night, lasting four to six hours, I hope the pain stops before I have to leave for work. When I get there, I’m exhausted and feel beat up, but I still have to do my job.

How satisfied are you with how well your current treatment options help manage attacks?

  • My doctor gave me [two medications] that I took for a while, but I had bad side effects.
  • I am looking for what we know will work. I am looking for a cure because they are so horrible.
  • On a scale of 1-10, I am zero satisfied or would say one.
  • It’s a rare disease, so there isn’t much research being done. I am always hoping for a better solution or a breakthrough.


Reducing the debilitating pain and number of attacks can help reduce the burden, improve quality of life and ensure people who suffer from episodic cluster headache can gain and maintain employability. These patients rely on their employers and insurers to provide access to effective treatment. People who suffer with episodic cluster headache should seek help from their doctor.


Sponsorship for these interviews were provided by Eli Lilly Canada Inc. The statements, opinions and viewpoints expressed are those of the interviewees, and are not reflective of the views of Eli Lilly Canada Inc.