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It began on a gloomy Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual 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-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives 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 office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value 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 documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what some observers would classify as a migraine. 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 Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more 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 early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a