Excruciating Agony: A Personal Fight Against the Enigmatic Suffering of Cluster Headaches

It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning 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 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: 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 tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate 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 pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a