Excruciating Agony: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. This was followed by rapid shocks, like lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around a single eye that lasts for several hours.
Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Still, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties 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 across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.
Historical medical texts suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in treating the disorder note this.
In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.
Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.
But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with occasional attacks are managed with abortive therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many 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 official guidance need revising to reflect a
