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It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around one eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small 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 throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor 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 daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

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

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a