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It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the pain eased and then returned with increased 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 pain remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked 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 incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are managed with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a