Oxygen, LSD, and the Experience of Living with Cluster Headaches

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.

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.

Scott Ganary discusses research with Science 37’s Jade Yen.

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.


Lawrence Lloyd has more than a decade of experience in health communication strategies, marketing, and content development in academic, Fortune 500, and start-up environments. Lawrence earned his MA in journalism from USC and his BA in communication from California State University, Los Angeles. He loves exploring the different ways that Science 37 can expand patient access to innovative therapies.

Comments

  1. Thank you for studying this condition, and thank you, Scott, for sharing your story. Just as Scott says, the stories of other sufferers help you feel that you’re not alone — my cluster headaches cycle in exactly the same patterns as Scott’s do. As painful and anxiety-producing as these are, I’m oddly fascinated that these patterns are alike, yet we don’t really understand what’s going on.

    1. I’m broke and insured , it’s a bad combo to have when your a CH suffer. I have been suffering from CH’s for over 20 years now and the only thing I’ve really found to help during a CH is O2.
      A few years ago i ate some Magic Mushrooms After my aunt sent me an article about a doctor who saw promise in her CH patients. I can say that my remission period was almost 2 years. Well my attacks have come back full force, which has led me to try mushrooms again.
      The first time i ate them i ingested around 3.5 grams dried. This past week i tried mushrooms again and around the same amount but have had no relief from them. I had high hopes that they would work a miracle for me and when they didn’t my depression came back.
      I’m at the end of my rope here and am looking for any help i can get.
      If anyone has any suggestions or an extra plane ticket to a country where i can get treatment that would be great, just kidding kinda!

      1. Broke and uninsured *

      2. Hi Justin.

        Scott here… just seeing this.
        A few things to note; It is best to use Mushrooms, LSD, DALT,and LSA as a preventative. Once clusters are out of the box it is hard to get them under control. However it is possible to bring them down to and even out by dosing every four days. It is important not to over do it as your body needs time to react and more often can be less effective.

        Cluster Buster People can advice in more detail. Hope you know how to use Oxygen too.

        Hang in there, and remember they always end!

        Scott

  2. I just wish people knew what we go through everyday of are lives,no one understand i was interviewed on Look North on BBC1,to try and get it out to people to understand what are lives are like day in and day out.

  3. I just want to say Thank You, I really hope your work can help.

  4. Thank you Science 37, very nicely done.

    I think this will be very much appreciated by the small, often over looked cluster community. I hope you have great luck reaching out to more people.

    Sincerely,

    Scott Ganary

  5. Scott’s story mirrors my own and I appreciate his willingness to speak out about it. All the medications we are prescribe are off label applications of drugs for other conditions. We need more research.

  6. I am truly thankful for my patient community! Thank you Scott and Science37. This article speaks our truth. I get so emotional and hopeful when I read my fellow patients tell the raw and unedited story of excruciating pain and nail it, exactly as it is over and over again. I have a pain-sleep disorder. It’s the most common of all the TAC’s. It’s devastating. Patients living with cluster headache are warriors. Researchers who are investigating how to alleviate this pain are heroes.

  7. I was cch , four micro doses of lsd broke that and gave me a three month pain free period . It wasn’t just that once , it changed everything to ech …. for ever .

  8. I have a similar story and success keeping my clusters at bay using micro doses of psilocybin.
    I am happy to share my story if it can help others.

    1. I found relief from psilocybin once, it last around 2 years. But they are back and more intense than ever. I have obtained more and was curious to what amount you take and how often?

      1. Hi Justin, I realize it has been over a month since you posted this. I am curious if you have been to the Clusterbuster’s site recently. Everyone there is so extremely helpful and the admins know there stuff. I used MM & LSD. I still have not made it 30 days pain free but it has significantly improved my life. They will help you anyway they are capable of helping.

  9. The internet has been amazing for bringing people with cluster headaches or other rare conditions together for information sharing and moral support. I have been fortunate in enjoying relatively good health to date, except for the cluster headaches which plagued me since the age of 28 for about four times a year in episodes of a couple-three weeks duration with multiple headaches per day, much as described by Scott Ganary in the article above.
    I ‘stumbled upon’ somebody’s blog with a link to Cluster Busters years ago while randomly exploring the internet, and wept with joy at finding I wasn’t alone, and at the kindness of others, including one woman (at the time it was widely believed that only men got cluster headaches) who gave me hope saying that her symptoms decreased greatly with menopause, which subsequently proved to be the case for me as well.
    As I investigated the Cluster Busters chatter about the Harvard study, I was thrilled to learn that an old friend, Dr. Andrew Sewell, was one of the researchers. I had met Andrew before he had gone to med school, and before I had received a diagnosis. Although it was wonderful to renew our friendship, I never participated in the trials. Andrew later founded the interdisciplinary Neurology and Psychology work at Yale.
    I am so glad this pioneering work continues and hope others will benefit soon. Please let me know if I can help in any way. I live in New Haven near Yale and would be happy to share my experiences with researchers.

  10. *Neurology and Psychiatry. Sorry -autocorrect typo.

  11. Glad you wrote this, Scott! I’m surprised and saddened to hear that so many doctors weren’t/aren’t able to identify Cluster Headaches. If someone is having these headaches at certain times of year and on one side of the head, a doctor should be thinking cluster headaches! My mother had them when I was growing up. They were sometimes called Histamine Headaches because they could be, if I recall correctly, sometimes brought on by a shot of histamine.
    My mom found Dr. Kudrow’s book too! He is, my mom told me, the father of Lisa Kudrow from the show “Friends.” My mom had an oxygen tank that was as large as she was in our living room when she had recurrences. I can’t believe these are so poorly known. They’re also called Hemicrania because they happen on one side of the head.
    I ran across them again in literature. The genius Soviet writer Bulgakov in his book “The Master and Margarita” described cluster headaches vividly back in 1930! When he wrote Pontius Pilate’s character in the book, he gave Pilate hemicrania and made the character suffer miserably from them and from the smell of attar of roses.
    As to LSD and psilocybin: Ergotamine was an old treatment for cluster headaches, so I’m not surprised that LSD has shown benefits to some. Ergotamine is a strong vasoconstrictor — it can cause gangrene if overused. But it was a migraine and cluster headache treatment. It was also believed to be the hallucinogenic agent used, if I recall correctly, by the ancient Greeks who were in the temple cult of Demeter, the goddess of the harvest and grain, and mother of Dionysus. (This is the tie-in to LSD.) The priestesses stored certain grain in such a way that the ergot fungus grew on it. They would take it as part of certain rituals and hallucinate.
    I hope you continue to find treatment fairly effective and I hope your story here helps other people get diagnosed and treated. We hope even more for great research to yield more effective treatments and for your cluster headaches not to return.

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