Full-Blown Agony: A Personal Battle With the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense discomfort around one eye that lasts for several hours.
About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.
Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.
In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.
Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.
But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. 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 discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
