Full-Blown Agony: A Personal Fight With the Puzzling Pain of Cluster Headache Syndrome

It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

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

Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? 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 the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a