Full-Blown Agony: My Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with severe discomfort behind one eye that persists for three hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What connects patients 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 reported thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.
Historical medical texts propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading specialists in treating the condition note this.
In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated 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.
Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.
But leading specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.
The official guidelines need updating to reflect a
