Excruciating Suffering: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome

It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came quick shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

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 intense headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced 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 dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are managed with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a