Excruciating Agony: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my one eye. Then came quick jolts, like electric shocks. As the school day progressed, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.
The attacks returned frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe discomfort around one eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long 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 pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Historical healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading experts in treating the disorder note this.
In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.
Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
