Unbearable Suffering: My Fight With the Puzzling Pain of Cluster Headaches

It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class 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 one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer 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 attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, 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 mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent experts in diagnosing the condition explain 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 brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession 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 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a