Full-Blown Pain: My Struggle Against the Enigmatic Pain of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense pain behind a single eye that persists up to three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for as long as 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 occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to organize daily activities around unpredictable attacks 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 looked after 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 recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient healing texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the disorder explain this.
In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.
National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a
