Full-Blown Suffering: My Battle With the Mysterious Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came rapid jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe discomfort around one eye that lasts up to several hours.
Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.
What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 described throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in treating the disorder explain this.
In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published 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 deactivation when they recovered.
Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, 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 triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.
Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.
But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
