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It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around one eye that persists for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak 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, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started 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 deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, 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 liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

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

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many 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 activity.

The national guidelines need revising to reflect a