🔗 Share this article

It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick shocks, reminiscent of electric shocks. 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 ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that persists for three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. 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 found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many 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 guidance need updating to reflect a