Excruciating Suffering: My Battle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort behind a single eye that lasts for several hours.
About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.
Historical medical records propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, 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, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.
National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.
But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.
The official guidelines need revising to reflect a
