🔗 Share this article

It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, 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 accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children 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 significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled 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. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a