Full-Blown Agony: My Struggle With the Puzzling Pain of Cluster Headaches
It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense pain around one eye that persists up to three hours.
About 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended pain-free periods.
What unites patients is the severity. One study scored 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 number fell to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for 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 documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who afflicted his victims' heads.
Ancient medical records propose bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.
In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.
Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.
But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
