🔗 Share this article

It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around one eye that persists up to several hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches typically begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually 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 relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 episode inside a facility.

---

Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the disorder 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 attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a