Full-Blown Agony: My Fight With the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. It was followed by quick stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort behind one eye that persists up to several hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. 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 condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as intoxicated episodes. 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 clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.
Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.
Historical healing texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.
It was a Dutch doctor 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 specific hours”.
The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.
National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.
But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. 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 procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need updating to reflect a
