Excruciating Agony: My Battle Against the Enigmatic Pain of Cluster Headache Syndrome

It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically start with abrupt, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes 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 periodic bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually 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 relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate 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 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 sufferers' heads.

Ancient healing records suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose 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 unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a