🔗 Share this article

It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came rapid stabs, like electric shocks. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks typically begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around unpredictable attacks took its toll. She especially 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 worst 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 episode inside a portable toilet.

---

Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a