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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl 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 teens, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a