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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, 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 decreases nerve signals.

The national guidelines need revising to reflect a