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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. It was followed by quick jolts, similar to 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 colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, severe pain focused on a single 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 accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? 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 cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a