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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks usually start with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, 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 episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions 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 describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.

Official guidance on management advise that patients are offered high-dose 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 reportedly soothes the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a