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It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid stabs, like lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global medical 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 head. Prominent specialists in treating the condition note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a