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It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple 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 described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms 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 attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a