Unbearable Agony: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It was a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
This condition often begin with severe discomfort behind a single eye that persists for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe pain around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the inability to organize life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in treating the disorder note this.
In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.
Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.
But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with occasional attacks are handled with acute treatment only. Longer or more intense periods require preventative medications 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 skull where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
