Unbearable Agony: A Personal Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe pain behind a single eye that lasts up to several hours.
About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, 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 freedoms 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 documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Ancient medical texts suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.
In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.
But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
