Excruciating Pain: My Struggle Against the Puzzling Pain of Cluster Headaches

It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. 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 formally recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a