🔗 Share this article

It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent specialists in treating the condition explain this.

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

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a