🔗 Share this article

It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a