Full-Blown Pain: A Personal Fight Against the Enigmatic Pain of Cluster Headaches

It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by rapid stabs, like electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically start with sudden, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, 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 relatives often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a