Full-Blown Suffering: A Personal Fight With the Enigmatic Pain of Cluster Headaches

It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. It was followed by rapid stabs, like electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind a single eye that lasts for three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties 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 facility.

Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks 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 helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a