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It was a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid stabs, like electric shocks. As each class came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes 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 symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation 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.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a