🔗 Share this article

It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain around a single eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks usually begin with abrupt, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple 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 throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists published the findings of a study 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 a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventative medications 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 side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a