It was a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick stabs, like electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe discomfort behind one eye that persists for several hours.
Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly disliked 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 worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.
Ancient healing texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder explain this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.
National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.
But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired 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 reduces nerve signals.
The official guidelines need updating to reflect a
