🔗 Share this article

It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for 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 recalls obtaining tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent 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.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a