Unbearable Agony: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It began on a dreary Monday 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 quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense pain behind a single eye that persists for several hours.
Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Still, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical healing texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the condition explain this.
In 1998, scientists published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack passed.
Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a