Excruciating Pain: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid shocks, like lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain behind one eye that lasts up to several hours.
About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize daily activities around erratic attacks 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 family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical records 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 therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.
In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority 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 dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.
National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some people.
But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The official guidelines need updating to reflect a
