Excruciating Agony: My Fight With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe pain behind a single eye that lasts for three hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Ancient healing texts propose bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.
In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.
National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
