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It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple 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 unbearable.

The headaches appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind one eye that persists for several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw 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 adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, 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 value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

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

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the results of a research project 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 activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth 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. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional attacks are handled with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a