Full-Blown Pain: A Personal Battle Against the Mysterious Pain of Cluster Headache Syndrome

It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by rapid jolts, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind a single eye that persists up to three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. 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 paralysis caused by the most severe episodes. “It steals from 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 comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a