Full-Blown Pain: My Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by quick stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain behind a single eye that lasts for three hours.
About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.
What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. 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 particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms 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 documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.
Ancient medical texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. 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 deactivation when they recovered.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some people.
But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
