🔗 Share this article

It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 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 put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more severe bouts 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 bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a