Excruciating Pain: My Fight With the Enigmatic Pain of Cluster Headaches
It was a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with intense pain behind a single eye that persists up to several hours.
About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Support eventually came from her parent 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, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records propose unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.
Cluster headaches were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in diagnosing the condition note this.
In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, 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 the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a physician researched his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches 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 dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.
National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.
But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. 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 discomfort is that decreases nerve signals.
The national guidance need revising to reflect a
