by Bonnie Butcher
“I had my first cluster headache when I was 22 years old. I burst out of the room while the professor was still talking. I ran into the quad, which was all beautiful concrete, laid down on my knees and slammed my head against the floor to knock myself out.”
These are the words of Dr. Lee Kudrow, a renowned neurologist and researcher in the field of headache medicine, describing his first cluster headache in an interview with Dr. Alan Rapoport, former president of the International Headache Society. Dr. Kudrow, now retired, wrote the first book ever to focus solely on cluster headaches.
There are many anecdotal accounts of cluster headaches being the most painful medical condition one can experience–described as more painful than childbirth or passing kidney stones–but scientific research on this is limited. The need for more information is especially important due to the severe psychological suffering the condition can cause. This has led University of West Georgia psychology Professor Dr. Larry Schor to establish an international study on cluster headaches as a path to better understanding the condition and providing better care for patients.
The study, a survey launched in early 2016, is a collaborative effort with Cluster Busters, a nonprofit research and educational organization involved in advocating and researching the treatment of cluster headaches.
“Our goal is approximately 1,500 respondents, making this the largest study in the world ever done on cluster headaches,” Schor stated.
Cluster headaches are so-named because attacks usually occur on a daily basis in “clusters” for weeks or months followed by periods of remission that can last for months or even years. Once an attack begins, the excruciating pain progresses rapidly and typically lasts for 45 to 120 minutes. The pain is described as searing, pressure-like, or sharp. The intensity of cluster headaches has the potential to make an unbelievable impact on every aspect of a person’s life.
“For those who experience two to three attacks per day, it can be impossible to hold down a job,” said Captain Stuart Pearson, UWG alum working with Schor. “It also has an impact on people’s families and relationships. It is really a full-time job to take care of someone who suffers from this condition chronically.”
One in every 1,000 people suffer from cluster headaches, including beloved “Harry Potter” actor Daniel Radcliffe. Also suffering from the condition is 350-pound NFL defensive tackle Terrance Knighton. In an interview with ESPN he stated, “On a scale of one to 10, the pain is a 50.”
For the majority of patients, the condition is episodic and they experience a period of remission before the next cycle occurs. However, about 10 percent of those with cluster headaches experience them chronically. For these people, every single day of their lives involves the unbearable pain of this condition.
Cluster headache pain focuses around, in, or behind one eye, but it can travel to the jaw, upper teeth, ear or even shoulders. An attack can bring other symptoms as well: watery eyes, runny nose, nausea, vomiting. Part of the study’s goal is to better understand patients’ severity of pain and description of pain.
“We’re going to be able to ask people to rate their experience with cluster headaches compared to other conditions they have experienced,” Schor said. “For instance, we’re going to have people who have given birth and passed kidney stones and been shot, and we’re going to ask them to rate those relative to each other. By comparison, there are people who have had 4,000 to 5,000 cluster headache attacks in their life. Even if it is the same intensity of pain as kidney stones, nobody has passed 4,000 kidney stones.”
Cluster headaches differ from the experience of the more common migraine headache. Unlike migraines, which appear more in females, cluster headaches occur predominately in males. Migraines can be manageable and potentially alleviated by lying down or resting. It is nearly the opposite for cluster headache patients because the pain is so intolerable.
“People with cluster headaches are typically pacing, rolling around on the floor, screaming, banging their head against the wall, or engaging in some other self-injurious behavior, simply as a distraction,” said Schor, who has worked with the National Suicide Prevention Lifeline (1-800-TALK) to provide training for call center workers.
The condition is commonly referred to as “suicide headaches” because of the potential for suicidality.
“There is a case in the literature review of a man who shot himself with a shotgun in the eye just to stop an attack,” explained Schor. “He actually survived, but people don’t do that because their shoulder hurts or because they are having a migraine.”
The study aims to provide a deeper understanding of suicidality among cluster headache patients, particularly focusing on when people are most at risk.
“No literature so far has been able to parse out the different aspects of suicidality, so we are looking at risk factors and protective factors for suicidality, as well as personal burden and access to effective treatment,” said Schor.
The cause of this condition is unknown, although a popular theory is that the hypothalamus is involved. The hypothalamus is a tiny but important part of the brain that helps us regulate our circadian rhythm (our internal “body clock”). The fact that these headaches occur in cyclical patterns, or clusters, has prompted researchers to target the hypothalamus.
Many treatments for this condition have not been successful. However, one treatment that has shown to help patients abort an acute attack is a high flow of oxygen. Unfortunately, this treatment is not available for all patients with the condition, and it does not prevent the cycle of headaches from continuing.
“Part of what we’re finding is that people have an easier time getting prescriptions for narcotic pain medicine which is ineffective, addictive and dangerous, and they have a very difficult time getting access to oxygen, which is effective and inexpensive,” said Schor. “What we’re trying to accomplish with this study is to further the academic body of literature and maybe even, as importantly or more importantly, to effect some change among the insurance companies so that people have better access to effective treatment.”
Other constructs the study will cover are demographics, medication use, existing and potential devices and procedures, impact on Quality of Life (QoL), and disability.
So far, Schor has received over 750 survey responses from patients in 40 countries. He recently received his second grant to support this research. Upon completion of data collection, Schor will begin sending out articles for review, as well as providing information for patient education and advocacy for additional research.
Schor, a Licensed Professional Counselor and American Red Cross Disaster Mental Health volunteer, is also responsible for the development and maintenance of www.georgiadisaster.info, which is the official Disaster Mental Health website for Georgia.Posted on