Full-Blown Suffering: My Battle Against the Mysterious Suffering of Cluster Headaches
It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with intense pain around a single eye that persists up to three hours.
About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.
What connects patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.
Still, the inability to plan life around unpredictable pain took its effect. She especially disliked being unable to plan outings, 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 small liberties 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 described across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.
Historical medical texts propose unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder note this.
In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals 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. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.
But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
