Unbearable Pain: A Personal Battle With the Puzzling Pain of Cluster Headaches
It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came quick shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain around a single eye that lasts up to three hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks 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 her youth. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate 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 earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient healing texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.
In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.
Official guidance on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.
The national guidance need revising to reflect a
