Unbearable Agony: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came quick jolts, like lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.
The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often start with severe pain around one eye that lasts up to three hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties 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 throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.
Historical healing texts suggest unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge 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 a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a physician researched his symptoms.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.
Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
