🔗 Share this article

It began on a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort behind a single eye that lasts for three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic 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 put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, 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 steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation 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 blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are handled with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a