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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came rapid shocks, like electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a