Excruciating Pain: My Battle With the Mysterious Pain of Cluster Headache Syndrome
It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense pain behind a single eye that persists for three hours.
Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks usually begin with sudden, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.
What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.
Still, the failure to organize life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Ancient healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the condition explain this.
In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation 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.
Despite such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.
Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
