Excruciating Pain: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with intense discomfort behind a single eye that persists for several hours.
Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, 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 described throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Historical medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.
In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.
But consultant specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.
The official guidelines need updating to reflect a
