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It was a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children 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 remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a