Excruciating Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. 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 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more intense 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 injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a