Full-Blown Suffering: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks returned repeatedly that autumn, and once more in the spring, soon forming 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 class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort around a single eye that persists for three hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to plan life around erratic attacks took its toll. 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 simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition note this.
In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
