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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially disliked being unable to plan outings, 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 steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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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 book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major 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 advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a