🔗 Share this article

It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony around one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, 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 national hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

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

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with infrequent attacks are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a