Trying to Understand Indescribable Pain

As a psychotherapist, Larry Schor, PhD, understands the psychological impact of cluster headaches more than most. He not only lives with the episodic form of the disease but has partnered with Clusterbusters—a nonprofit founded to promote research and provide support for cluster headache patients—to study and shed light on the subjectivity of the pain and suicidality of the condition. Facilitating therapeutic groups with others living with cluster headaches at Clusterbusters meetings has been both healing and illuminating. The experience of being understood by others can be transformative; especially for those living under the weight of a condition that is so very misunderstood.

What strikes him the most is his disbelief of his own experience after attacks, particularly his first one at 21-years-old. “My first attack came out of nowhere,” Larry shares. “And within minutes, I had this explosive pain behind my right eye that felt like I must either be having an aneurysm or brain tumor. I couldn’t do anything other than bang my head on the ground… It kind of went away as quickly as it came after an hour and 15 minutes. And then I found myself wondering, ‘How weak I must be. It couldn’t have possibly hurt that bad.’”

That initial experience was in 1983 and the start of a six-week episodic cycle. “Of course, that was before the internet, so I really had nowhere to go to better understand what was happening to me. It was like some alien entity had invaded my head and I knew that sounded crazy.”

“As I look back on it, [it was] partly out of fear that no one would believe me or that it couldn’t be as bad as it seemed,” he says. “And maybe some sort of weird notion of, if I mentioned it, that kind of breathed life into it and maybe if I just pretended it won’t happen… I didn’t see a doctor because who wants to hear they’ve got a brain tumor.”

An adrenaline “squirter”

Every two years for six weeks at a time, Larry was plagued by these attacks four times a day. Each one would bring on indescribable pain that made nothing else matter and came with the autonomic symptoms associated with the condition: droopy eye, facial sweating, and a runny or stuffy nostril on the right side of his head.

“I don’t want a gun, but during an attack, it feels like what I’d really like to do is to take a gun and kill it, and I would just be collateral damage. So it really has felt to me like some otherly entity, and I would like to violently destroy it, even if it meant that I go with it.”

Larry was finally diagnosed with episodic cluster headache five years later when a loved one insisted he go to a doctor. The physician told him he is an “adrenaline squirter.” He theorized that Larry’s brain released too much of the hormone adrenaline, which caused his pain.

The doctor prescribed large doses of propranolol and nortriptyline. However, causation and correlation make it challenging to know which medications worked for Larry and whether the cycles met their natural end. More recently, oxygen (used properly) is the only abortive treatment he’s found effective—he keeps a large tank in the house and a small tank in his office or hidden in a backpack.

Photographic Memories of Pain and Fear

There is at least one attack per cycle that Larry can recall with uncanny clarity — details such as the pattern of the restroom ceiling tiles while he rode out an attack on the cold floor. Or, the time he had a few sips of champagne on New Year’s Eve that triggered an attack within 10 minutes, causing Larry to rush out of the party. These memories are tattooed on his mind but are shelved along with the fear and all thoughts of cluster headaches as soon as the cycle is over.

Everything changed with the advent of the internet, the discovery of Clusterbusters, and meeting fellow Clusterheads.

“During a cycle, I would be all over the internet and reading everything I could, and then as soon as the cycle was over, I’d stop doing that because I had the luxury to say that that’s not me anymore,” he says with a guilty tone to his voice.

He often feels like he’s won the lottery when more than two years pass by without another episodic bout, especially when he thinks of chronic patients, who may face up to eight cluster headaches every single day.

It’s been seven years since his last attack, which could be attributed to a large dose of LSD (with the endorsement of several expert neurologists) on the heels of his 2014 cycle, but could also be sheer luck. (LSD is a an illicit drug, but research increasingly shows it is effective in treating cluster headache.) While he feels embarrassed to tell other “clusterheads” about this long remission, he realizes that it’s helpful to share that it’s possible. He also knows there’s no guarantee he won’t wake up tomorrow with a cluster headache attack.

Larry has used this remission to do astounding work in cluster headache research, advancing understanding of the psychological implications and true severity of the pain like no one before him.

Quantifying the Pain and Suicidality of Cluster Headache

With the help of Clusterbusters, which Larry credits for changing his life, and his graduate assistant, Stuart Pearson, Larry embarked on the largest and first-ever study on cluster headache pain. They constructed a survey to quantify the subjective experience of a cluster headache attack; more than 3,000 people in nearly 70 countries completed it.

“If you ask two people on the visual analog scale of 1 to 10, ‘How bad does that broken arm hurt?’ Someone might say three, and someone might say eight with the same injury,” Larry explains. “But if you ask someone who’s had a broken arm and passed a kidney stone, they’re able to rate them relative to each other. That was what we were able to do that no one had done before… They [the data] show that far and away cluster headache is more painful than what has been described as some of the most painful conditions humans experience, like kidney stones, pancreatitis, childbirth, [and a] gunshot wound.”

Their findings on the condition (Cluster Headache Questionnaire) have been published in Headache, MDEdge® Neurology, and will be in a forthcoming article in Cephalalgia. Larry’s work is crucial in many ways, most notably because the sheer lack of education medical professionals (even specialists) receive on cluster headache is negligent. Many patients are misdiagnosed for years or labeled drug-seekers when they simply need treatments that work — like high-flow oxygen.

“[My doctor] reported to me that he was on call and got a call from the ER that one of his cluster headache patients was med-seeking,” Larry says. “They put him on IV morphine, and he said the patient said it wasn’t helping at all. And so, they called him to say that he was med-seeking, and he said, ‘Put him on high-flow oxygen immediately.’”

It’s an uphill battle from diagnosis to treatment and support for almost every cluster headache patient. Larry’s advice is never to give up and keep trying all of the options out there as each person is unique in how they respond to treatment. He recommends finding the best neurologist in your area and Clusterbusters for resources and support from others just like you.

“It’s been my experience that nothing works for everyone, but something works for nearly everyone,” says Larry.

—Ashley Hattle