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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around a single eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe pain around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. 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 especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, 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 teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a