Full-Blown Pain: A Personal Battle Against the Puzzling Suffering of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around one eye that lasts up to several hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, 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 a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.
Historical medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing 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 ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.
Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.
But consultant neurologists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are managed with abortive therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
