Excruciating Pain: My Fight With the Mysterious Pain of Cluster Headache Syndrome
It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe pain around a single eye that persists for several hours.
Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Historical medical records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious 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 severe headache occurring and vanishing daily at fixed hours”.
The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.
National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
