Full-Blown Pain: A Personal Fight With the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with severe pain around a single eye that persists up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often interpreted her episodes as intoxicated episodes. Understanding 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 clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly 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 paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical records suggest unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.
In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The national guidance need revising to reflect a
