🔗 Share this article

It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain bloomed behind my one eye. This was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities 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 looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in treating the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent 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 felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most 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 misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a