🔗 Share this article

It began on a gloomy Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a