Excruciating Suffering: My Struggle With the Puzzling Pain of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with intense pain around one eye that persists up to three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.
Historical healing records propose bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.
Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.
But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with occasional attacks are handled with acute therapy alone. Longer 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 injection into the side of the head where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a
