🔗 Share this article

It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant 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 fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain around a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a