🔗 Share this article

It was a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a