Excruciating Suffering: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The attacks returned frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense discomfort behind a single eye that lasts up to several hours.
About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.
Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published 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 deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.
National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.
But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.
The national guidance need updating to reflect a
