Excruciating Agony: A Personal Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, 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 late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with intense discomfort around a single eye that lasts for three hours.
About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of long pain-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.
In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, 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.
Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
