Excruciating Suffering: My Struggle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my right eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.
The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with severe pain around a single eye that lasts up to three hours.
Approximately 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure 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 put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.
Nevertheless, the inability to plan life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts propose bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.
National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.
But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
