Unbearable Agony: My Battle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with severe discomfort around one eye that persists up to several hours.
About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.
What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, 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 liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.
Ancient healing texts propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition explain this.
In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, 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. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician looked up his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed patient 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 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 treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.
Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.
But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.
The official guidelines need revising to reflect a
