Full-Blown Pain: My Battle Against the Puzzling Suffering of Cluster Headaches
It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.
The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense pain behind one eye that persists up to several hours.
About one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Still, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in treating the disorder note this.
In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major 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 reduction when they felt better.
In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.
National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.
But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.
The official guidelines need revising to reflect a
