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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind one eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating 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, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, 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 signals.

The national guidance need revising to reflect a