Excruciating Agony: My Battle Against the Puzzling Pain of Cluster Headaches
It began on a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around one eye that lasts up to several hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.
What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, 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 mistook her attacks as drunken episodes. Understanding 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 moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient healing texts propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go 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 episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.
But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short cycles with infrequent episodes are handled with abortive therapy only. More prolonged or more severe periods require preventative medications 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
