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It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky 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 simple liberties we don't value 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 described throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, 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 advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a