Excruciating Agony: My Struggle With the Enigmatic Suffering of Cluster Headaches
It began on a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. It was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often start with severe discomfort behind a single eye that lasts up to three hours.
Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the failure to organize daily activities around unpredictable 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 paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.
Ancient healing texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
Cluster headaches were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading experts in treating the condition note this.
In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.
Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But consultant specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a
