🔗 Share this article

It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain behind one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in treating the disorder note this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a