Excruciating Suffering: My Battle Against the Mysterious Pain of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often start with severe pain around one eye that persists for three hours.
About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically start with abrupt, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to plan 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 cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.
Ancient healing texts suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in diagnosing the disorder note this.
In 1998, researchers published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.
National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
