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It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute treatment only. 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 greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a