Unbearable Pain: A Personal Struggle Against the Puzzling Pain of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often begin with intense pain around one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in treating the disorder note this.
In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, 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 recovered.
In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. 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 revising to reflect a
