Excruciating Agony: A Personal Battle With the Puzzling Suffering of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort behind a single eye that persists up to several hours.
About one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended pain-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 pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the inability to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties 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 portable toilet.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical records propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.
Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. 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 signals.
The national guidance need updating to reflect a