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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure 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 ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding 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 2002 at a national neurology center.

Still, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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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 topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a