🔗 Share this article

It began on a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. 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 paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient 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 guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some people.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a