🔗 Share this article

It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. This was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around one eye that persists up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually start with abrupt, excruciating agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. 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 found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition 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 dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a