Excruciating Agony: A Personal Battle Against the Mysterious Pain of Cluster Headache Syndrome
It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with intense discomfort behind one eye that lasts for several hours.
About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, 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 winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical medical texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, 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 reduction when they recovered.
In spite of such progress, identification remains slow. One man'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 surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars 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 she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.
Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.
The official guidelines need updating to reflect a
