Unbearable Agony: A Personal Battle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.
The headaches returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with severe discomfort around one eye that lasts for several hours.
Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.
What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family 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 obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient healing texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, 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 medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.
Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But consultant specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.
The official guidelines need updating to reflect a
