Unbearable Suffering: A Personal Fight Against the Puzzling Pain of Cluster Headache Syndrome

It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came quick shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. 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 eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple 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.

Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain 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 long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are handled with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a