Full-Blown Agony: A Personal Struggle Against the Puzzling Pain of Cluster Headaches
It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense pain around a single eye that persists up to several hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed 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 daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in treating the condition note this.
In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.
National guidance on management advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.
But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
