Unbearable Agony: A Personal Struggle With the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by quick jolts, like electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches appeared frequently that fall, and again in spring, soon establishing 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 pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often start with severe pain around one eye that lasts for three hours.
About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed 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 inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value 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 the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only officially classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in treating the condition note 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 data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.
Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But leading neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.
The national guidelines need revising to reflect a