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

It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding 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 condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks 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 operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing 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 preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a