Excruciating Agony: A Personal Fight With the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe pain around one eye that persists for several hours.
About 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical medical records propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the condition explain this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.
But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
