Excruciating Agony: My Fight Against the Mysterious Pain of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick shocks, similar to lightning bolts. As each class came and went, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around one eye that persists up to three hours.
About 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally 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 hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for 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 remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Historical medical records propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in treating the condition explain this.
In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say delays in diagnosis and treatment happen 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 primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms 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 verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists 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. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.
National guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.
But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
