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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 class, when a sudden pain erupted behind my one eye. Then came quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain behind one eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris'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 had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a