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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick stabs, like electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, 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 freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a