Excruciating Pain: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with severe pain behind one eye that persists for three hours.
Approximately 1 in 1000 individuals suffer by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, severe 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 associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly hated 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 paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.
Historical medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk cures.
It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.
National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.
But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with occasional episodes are managed with acute treatment only. Longer or more severe periods 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 area of the head where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
