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

It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that persists for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks usually start with abrupt, severe agony around one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. 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 office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across 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 linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

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

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, 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 felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are handled with acute therapy only. More prolonged or more severe bouts require preventives 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 area of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a