🔗 Share this article

It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, excruciating agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes 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 reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a