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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially 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 freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a