Excruciating Pain: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak 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 the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with severe pain behind one eye that lasts up to three hours.
About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode 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 disease to an evil entity who afflicted his victims' heads.
Ancient healing texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in treating the condition explain this.
In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, 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 discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
