Full-Blown Pain: My Battle With the Mysterious Pain of Cluster Headache Syndrome
It was a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe discomfort behind a single eye that persists for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.
Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Ancient healing records propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in diagnosing the condition note this.
In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms started 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 multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced 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 teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.
But consultant neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.
The national guidance need updating to reflect a
