🔗 Share this article

It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long 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 pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

---

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

Historical medical texts propose unusual 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 ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

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

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a