Excruciating Agony: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, 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 dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly hated 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 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 recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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.

Ancient medical records propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a