Unbearable Suffering: My Battle Against the Mysterious Suffering of Cluster Headaches
It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks appeared frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with intense discomfort behind one eye that lasts up to several hours.
About 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to organize daily activities around erratic 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 looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms 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 facility.
Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient medical texts suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left 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 delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.
Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But leading neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional episodes are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
