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It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life around erratic 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value 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 described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a