Excruciating Agony: My Struggle Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around a single eye that persists for three hours.
About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.
What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, 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 small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first description 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 malevolent entity who attacked his victims' heads.
Historical medical texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in treating the disorder note this.
In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.
National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a
