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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking 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 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 condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate 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 described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in diagnosing the condition note 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, published in a major 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 felt better.

Despite such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute therapy alone. More prolonged or more severe 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 injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a