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It was a dreary Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the discomfort 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 paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken 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 office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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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 authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists 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 works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with occasional attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a