🔗 Share this article

It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation 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 obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a