Excruciating Pain: My Battle With the Enigmatic Suffering of Cluster Headaches
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 intense sensation bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense pain around one eye that lasts for several hours.
Approximately 1 in 1000 individuals suffer by the disorder, and men are more often affected. Cluster headaches usually begin with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.
Ancient healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.
It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in treating the disorder note this.
In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.
National guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
