Unbearable Suffering: A Personal Fight With the Puzzling Suffering of Cluster Headache Syndrome

It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. It was followed by rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic pain took its toll. She especially disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. 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 awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. 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 cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a