Full-Blown Pain: My Struggle Against the Mysterious Suffering of Cluster Headaches
It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick shocks, like electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with severe discomfort around one eye that lasts up to three hours.
About 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining 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 comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Historical healing texts propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession 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 attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.
Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.
The official guidelines need revising to reflect a