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It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around one eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks 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 childhood. Drinking in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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

Ancient healing texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of 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 hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. Longer 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 side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a