Excruciating Pain: My Fight Against the Puzzling Pain of Cluster Headaches

It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. Then came rapid stabs, like electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind a single eye that persists up to three hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, 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 small liberties we don't value 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 throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing records propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a