Unbearable Agony: A Personal Fight With the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain behind one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a