Unbearable Agony: A Personal Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain behind a single eye that persists up to several hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long pain-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. 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 found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.
Ancient medical texts propose bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.
Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.
Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.
But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
