Full-Blown Agony: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. This was followed by quick stabs, like electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense pain behind one eye that lasts up to three hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.
What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.
Ancient medical texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in diagnosing the disorder note this.
In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? 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 verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.
National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.
But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
