🔗 Share this article

It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a