🔗 Share this article

It was a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid shocks, similar to electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort around one eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that reaches its peak 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 face sweating. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, 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 recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially recognised by international headache 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 brain. Leading specialists in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 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 dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a