Excruciating Suffering: My Struggle With the Mysterious Pain of Cluster Headaches
It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense discomfort around a single eye that lasts for several hours.
About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of long pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part 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 erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical medical texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.
Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent experts in diagnosing the condition note this.
In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult 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 misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.
National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.
But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
