Excruciating Agony: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe pain behind a single eye that lasts for several hours.
Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started 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 deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Historical medical texts suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in diagnosing the disorder note this.
In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack passed.
National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
