🔗 Share this article

It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased 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 tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort around a single eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated 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 took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a