Unbearable Suffering: My Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.
Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly 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 paralysis 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 across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical medical texts suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.
It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.
In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode passed.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.
The official guidelines need updating to reflect a