Excruciating Agony: My Battle With the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by rapid jolts, like electric shocks. As the school day progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe pain around one eye that lasts up to several hours.
Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.
Ancient medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder note this.
In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say wait times in diagnosing 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 ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some people.
But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.
The official guidelines need updating to reflect a
