Excruciating Agony: A Personal Fight With the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. This was followed by quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The headaches returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with intense discomfort around one eye that persists up to three hours.
About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Nevertheless, the inability to plan life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, 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 liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts suggest unusual treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.
The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer 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 me through oxygen treatment and medication until the attack eased.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some individuals.
But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a