Excruciating Pain: My Fight With the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe pain behind one eye that persists for several hours.
About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading specialists in treating the disorder note this.
In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
