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It began on a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit 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 worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly 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 steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a