Excruciating Suffering: My Fight With the Mysterious Pain of Cluster Headache Syndrome
It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came quick jolts, like lightning bolts. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense discomfort behind one eye that persists up to three hours.
About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, 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 small 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 throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Historical medical records propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.
National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.
The official guidelines need revising to reflect a
