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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind a single eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding 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 took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities 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 looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

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

The disorder were only officially recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a