Excruciating Pain: A Personal Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense pain behind a single eye that lasts for several hours.
Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.
In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.
National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.
But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
