Unbearable Pain: My Struggle With the Enigmatic Pain of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.
The attacks appeared frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with intense pain behind a single eye that persists for three hours.
About one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to plan life around erratic pain took its toll. She particularly disliked 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 simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.
Historical medical texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European physician 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 happening and disappearing each day at specific hours”.
The disorder were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.
Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.
But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.
The official guidelines need revising to reflect a
