Full-Blown Pain: My Fight With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.
The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe discomfort around a single eye that persists for several hours.
About one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient healing records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.
National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.
But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.
The official guidelines need revising to reflect a
