Excruciating Pain: A Personal Fight With the Puzzling Suffering of Cluster Headaches
It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. This was followed by quick shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often begin with severe pain around a single eye that persists up to three hours.
About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches typically begin with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What connects patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan daily activities around erratic pain 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 robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his victims' heads.
Ancient medical texts propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, 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. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion 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 inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.
But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.
The official guidance need revising to reflect a
