Full-Blown Suffering: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense pain around one eye that lasts up to several hours.
About one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, 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 a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted 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 thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
