Full-Blown Suffering: My Struggle Against the Puzzling Suffering of Cluster Headaches
It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain around one eye that lasts for several hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically start with sudden, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only formally classified by global medical 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 blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition note this.
In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.
National guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a
