Ed. note: Cluster headaches, often called a mysterious affliction, are not widely known or studied. Scott Ganary has suffered from cluster headaches for more than two decades. He spoke with the Science 37 team to offer a firsthand account of his experience with this condition.
Disclaimer: The opinions expressed herein by Scott Ganary and those providing comments are theirs alone, and do not reflect the opinions or positions of Science 37 or any employee thereof. Science 37 does not endorse and is not responsible for the accuracy of any of the information supplied by Mr. Ganary or any commenter.
What Cluster Headaches Feel Like
The pain is excruciating. I’ve literally been in the hospital with IV drips of narcotics yet still in screaming pain. Cluster headaches are so scary, some people call them suicide headaches because some patients have committed suicide because of the pain. They can hit in a matter of minutes; I start getting a sensation in my head and it goes from zero to excruciating pain. I feel like there is a hot bayonet going through my eyeball and someone’s turning it. To put it another way, I’ve been in the room with women who have suffered from cluster headaches, and they’ve rated the pain as much worse than child labor.
Cluster headaches are often confused with migraines, so people ask me, what do you do when they hit? Do you go in a dark room and be quiet? No. I’m walking around the room screaming and cursing like a person with Tourette’s syndrome with impossible pain. My headache lasts no less than 45 minutes, but it can go on for three hours. Plus, my headaches hit me twice a day, usually 12 hours apart. When the attack stops, you’re a wreck, because you feel like someone has just tortured you. You’re confused and exhausted. When people endure months of this, with no help, they really do think, “I’m not going to live my life this way.” It is torture.
Searching for Understanding
Sometimes clusters start when people are in their 20’s or 30’s. I started having cluster headaches more than 20 years ago, in my 40’s and it was unclear what they were at first. Nobody knew much about cluster headaches except for a few neurologists. The first 10 years of living with cluster headaches were just so frustrating because I could not find a doctor who knew what they were. Most of the time, I’d go to the emergency room and nobody even knew what I had, so it’s great that there is research on it and people are curious about it. It’s wonderful.
For most people, cluster headaches are episodic — they start at the same time every year. For years, mine started around May 15. Then they would go away for nine months. Most of us who have clusters try to put the experience behind us, hope it never happens again, and try to live life normally. But in the back of your mind is the fear that they could come back and how devastating that would be to you and to your life.
My wife has been very understanding, but I think it’s very hard to be around a person that has clusters. You are one depressed, angry bear — because you hurt. You’re miserable. You’re frightened to death. These headaches can potentially ruin your life, so it’s very tough. I am not in that condition now. But, there are some people who really, really suffer. I have a friend who has tried everything that has worked for me and other people with no luck. He had to go on disability this year.
Finding Treatment, Finding Community
Very few people have this condition and even fewer people know anything about it, so we were out there just struggling. About 10 years ago, I became familiar with a cluster headache advocacy group called ClusterBusters. I went to these early meetings and would meet with people who, like me, had never had met another person who had clusters. Suddenly there are 100 people who have clusters and it’s a miracle just to be able to share stories, talk to doctors, etc. — it’s very heartening and you know you’re not alone with this. I guess it’s that camaraderie you find with someone in a parallel hell.
One thing I learned from talking with this community is that because there aren’t a lot of established treatment options for cluster headaches, people try strange things to find relief. In 1998, there were rumors floating around that someone in Scotland had used the hallucinogenic LSD recreationally and his clusters hadn’t come back. This got back to Bob Wold, founder of ClusterBusters, and he took this anecdotal finding to researchers at Harvard. They organized a study where they found 54 cluster patients and gave them LSD — 48 of them were affected positively by this drug. There was another clinical trial in Germany that studied BOL-148 (a non-hallucinogenic variant of LSD) as a treatment option for clusters, and I know one of the trial participants who flew over there for that. She has been in remission for six years with two doses of this drug. It would be great to see more research exploring whether this is an effective treatment for clusters, but given the United States’ classification of LSD as a Schedule I drug — meaning there is “no currently accepted medical use and a high potential for abuse” — further research into this area has been challenging. However, Yale University currently has an FDA-approved study that explores psilocybin, the active ingredient in psychedelic mushrooms, as a potential treatment.
Oxygen works really well for headaches, too. That was something I learned from Dr. Lee Kudrow, who was a doctor who suffered from clusters. He tried many, many things, but he did come across the fact that breathing pure oxygen can stop an attack. Or, in my case, oxygen can reduce the length of the attack to around seven minutes instead of 45 minutes. I hope more doctors become aware of these developments.
Other treatments — I’ve personally tried migraine medications, blood pressure medications, antidepressants, seizure medications, and steroids — haven’t really been that effective for me and many other patients I know, so it’s exciting to see more research in this area.
The Importance of Research
The fact that Science 37 is researching this area is great. I’m so happy to talk about this condition and tell everyone about my experience because I think there are a lot of people like me out there, and many more untreated. I work in advertising, and I know how great the internet is at expanding the reach of your efforts. Reaching people online, whether through stories like mine or letting people know about the research effort, is the right path for addressing this illness and many others. It is really going to accelerate the study and awareness of cluster headaches in ways that were not possible before. It’s so much better than trying to find a random doctor who’s really not going to know much about this orphan affliction. Research can do something huge for a desperate community that’s small and needs help, so I’m thrilled with the increased focus on cluster headaches.