Excruciating Pain: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense pain behind one eye that persists up to several hours.
About one in 1,000 people suffer by the condition, and men are more often affected. Attacks usually start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.
One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. 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 symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Support 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 relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Historical medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.
Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In 1998, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack passed.
National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known people.
But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.
The national guidance need revising to reflect a
