Tom Zeller Jr’s Journey with Cluster Headaches

For years, Tom Zeller Jr. has been on a relentless quest to find relief from his headaches.

He’s tried everything—downing 60 glasses of water in a day, taking in oxygen from a tank, and even experimenting with magic mushrooms high in the Montana mountains.

At 56, Zeller’s battle with cluster headaches began nearly thirty years ago. These intense episodes strike unexpectedly and can last for weeks or even months. It’s not uncommon for there to be years between attacks, but when they hit, they’re as sudden as a lightning bolt. Zeller compares the sensation to resting your hand on a hot stove, unable to pull away.

“They’re excruciatingly painful,” Zeller shared. “They come on really quickly, usually without warning, and can knock you down until they’re gone.”

Living in Montana, he endured episodes that could occur multiple times a day for long stretches, only for them to seemingly vanish on their own. While the frequency of his attacks has lessened in recent years, Zeller, like the 1 in 1,000 Americans living with this condition, remains on edge, equipped with few strategies to manage it.

In his newly released book, The Headache: The Science of a Most Confounding Affliction – and a Search for Relief, Zeller opens up about his long pursuit of relief, detailing some of the more outlandish methods he’s tried.

“I never wanted to write this book, to be honest,” he admitted. “I didn’t want anyone to know I had headaches. It feels awful to be perceived that way.” Yet, he realized that if he was going to write, it should be about what he knows—headaches.

Cluster headaches are infamous for their severe, sudden pain, often calling to mind the grim nickname ‘suicide headaches.’ The pain typically occurs around the eye and is accompanied by symptoms like restlessness, tearing, and swelling. Though related to migraines, they are far less common, affecting about 0.1% of Americans, compared to nearly 15% for migraines.

Zeller has noted that his condition strained his journalism career, forcing him to turn down opportunities. “It’s tough. The book discusses how any headache can really slow you down,” he reflected. “When I wasn’t having an attack, I felt accomplished, but during one, I would often retreat to work from home.”

“There’s a stigma to headaches, which is strange. I really tried to keep it a secret, which often meant missing out on opportunities,” he recalled.

In his book, he lists an array of unconventional treatments he’s tried. He describes feeling worn down by continuous injections into his already bruised abdomen and notes how excessive medication could lead to rebound attacks.

“With that grim reality, why not try mushrooms?” he pondered.

Psilocybin, the active ingredient in magic mushrooms, is thought to change how the brain perceives pain and might help reduce inflammation. Zeller has also utilized capsaicin from chili peppers, as some studies suggest it can help desensitize the nerves that transmit pain to the brain. Additionally, he rented oxygen tanks to quickly abort headache attacks.

“I even came across a forum suggesting that chugging 60 glasses of water daily could cure headaches,” he laughed, “but it only led to frequent bathroom visits.”

Zeller pointed out that many cluster headache sufferers are left to experiment with bizarre remedies due to the limited availability of targeted medications.

“What surprised me most was the lack of research on primary headache disorders,” he explained. Patients are often given beta blockers and antidepressants—drugs designed for other conditions—but that often leaves them wanting.

Recently, CGRP drugs have emerged as a breakthrough, approved in 2018 to help manage migraine and cluster headache pain. Zeller uses Emgality, the only FDA-approved medication specifically for these types of headaches. The dosage for cluster headaches is higher than for migraines, administered through a subcutaneous injection.

“Cluster headaches are unique,” he said. “Once they start, it’s really hard to stop them.” But he added, “I’m starting to believe that these CGRP blockers work for me.”

Interestingly, cluster headaches can become less frequent and less severe as people age, possibly due to hormonal shifts and changes in blood vessel function in the brain.

Zeller’s attacks have slowed significantly, sometimes separated by years, yet he doesn’t feel entirely free from them. “I don’t think anyone is truly out of the woods,” he remarked.

He hopes his new book will drum up awareness about cluster headaches, creating community for those who suffer from them. Through his research, many patients initially approached interviews with caution, worried their experiences would be trivialized. But as they spoke, the excitement to share their stories became palpable.

“I hope they feel seen by the book,” Zeller concluded. “Someone is paying attention, and if you find ways to manage the pain between attacks, I hope you understand you’re not alone.”

The Headache: The Science of a Most Confounding Affliction – and a Search for Relief is now available at various retailers.