🔗 Share this article

It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick jolts, like lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, 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, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks 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 steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidance need updating to reflect a