Excruciating Agony: My Battle Against the Puzzling Pain of Cluster Headache Syndrome
It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came quick shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense discomfort around a single eye that persists up to three hours.
Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Still, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children 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 recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical texts propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.
It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in treating the disorder note this.
In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. 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 tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.
But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
