🔗 Share this article

It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically start with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her 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 misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a