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It began on a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. 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 moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a