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

It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain around a single eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

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

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches 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 dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a