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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick stabs, reminiscent of 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 worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global headache committees 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 head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms 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 cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches 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 pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient 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 episode passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a