Unbearable Pain: A Personal Fight Against the Mysterious Pain of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with severe pain behind one eye that persists for several hours.
About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major 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 Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient healing records propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity 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, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a
