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It began on a overcast Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind one eye that persists up to three hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially disliked 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 paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a