Unbearable Agony: My Battle Against the Puzzling Suffering of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came rapid jolts, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.
About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.
One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to organize life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small 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 facility.
Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.
Ancient healing records suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading experts in diagnosing the condition explain this.
In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed 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 circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack eased.
National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.
The national guidance need updating to reflect a
