Excruciating Pain: My Struggle With the Enigmatic Pain of Cluster Headaches
It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came quick stabs, similar to lightning bolts. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.
The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with intense pain around one eye that persists up to several hours.
Approximately 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to plan life around erratic 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 children 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.
Ancient healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
The disorder were only officially recognised by global 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 supplies blood to the head. Prominent specialists in treating the condition note this.
In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, 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 progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack eased.
Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.
But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are managed with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
