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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. Then came rapid jolts, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around one eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; 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 throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after 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 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 first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity 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.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined 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 pain is that reduces nerve activity.

The national guidance need revising to reflect a