Full-Blown Agony: My Battle Against the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The headaches returned frequently that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. 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 pain behind a single eye that lasts up to three hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated 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 simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.
Ancient medical records propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in treating the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.
National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
