Unbearable Suffering: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast 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 intense sensation erupted behind my one eye. It was followed by rapid shocks, similar to electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe pain behind one eye that lasts up to several hours.
About 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.
One patient, 74, a chronic 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 attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 portable toilet.
Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.
Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.
But leading neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with occasional episodes are managed with abortive treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.
The official guidelines need revising to reflect a
