Full-Blown Agony: My Struggle With the Mysterious Suffering of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a