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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain around a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially hated 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 liberties we don't appreciate 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 documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she 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 eased.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a