Excruciating Suffering: My Struggle Against the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. This was followed by quick shocks, like electric shocks. As each class progressed, the discomfort subsided and then came back with greater force. 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 ibuprofen, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort around one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken 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 took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the inability to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, 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 small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in treating the disorder note this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. 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 updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are handled with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
