Unbearable Agony: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation erupted behind my right eye. This was followed by quick shocks, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition often start with severe pain behind one eye that persists up to three hours.
About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After having sherry 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. Support 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, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the inability to organize life around erratic attacks took its toll. She especially 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 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 significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.
Historical medical texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in treating the condition note this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes 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 advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, 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 much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.
Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
