Unbearable Agony: A Personal Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the pain eased and then came back 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 ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense pain behind one eye that persists up to several hours.
About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.
Ancient medical texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk cures.
It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches 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 teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.
National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.
But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
