Excruciating Agony: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs 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 facility.
Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the condition note this.
In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.
Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.
But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
