🔗 Share this article

It was a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly 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 train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation 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 obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a