Unbearable Agony: A Personal Fight Against the Mysterious Suffering of Cluster Headache Syndrome

It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “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 dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, 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 sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a