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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis 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 episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical healing records propose unusual treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a