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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic 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 family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, 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. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists 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 attack in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.

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

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a