Unbearable Agony: My Battle Against the Mysterious Suffering of Cluster Headache Syndrome
It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain around a single eye that lasts up to three hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks usually start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the failure to organize daily activities around erratic pain took its effect. 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 simple freedoms we don't value until they're gone,” she says. She remembers obtaining 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 originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.
Ancient medical texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.
The disorder were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.
National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.
But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
