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It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October 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 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor researched 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 severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many 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 activity.

The national guidance need updating to reflect a