Excruciating Suffering: My Battle With the Enigmatic Suffering of Cluster Headaches
It began on a dreary weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my one eye. It was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense discomfort behind one eye that persists for three hours.
About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.
What unites patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes 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 childhood. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small 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 portable toilet.
Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in treating the disorder explain this.
In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.
But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The official guidance need revising to reflect a
