Excruciating Pain: My Battle Against the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe pain around a single eye that persists up to several hours.
Approximately 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially 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 paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Historical healing records suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, 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 occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in treating the disorder explain this.
In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.
National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
