Excruciating Pain: A Personal Battle Against the Mysterious Pain of Cluster Headaches

It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 people are affected by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable pain 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 cared for by her family during the incapacitation caused by the most severe 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 history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches 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 misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications 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 pain is that decreases nerve signals.

The national guidelines need revising to reflect a