Unbearable Suffering: A Personal Fight With the Mysterious Pain of Cluster Headache Syndrome

It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. This was followed by quick shocks, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

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

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a