Excruciating Suffering: My Struggle With the Mysterious Suffering of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. Then came quick shocks, like electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense pain behind a single eye that persists for three hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Historical healing records suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in treating the disorder note this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.
Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. 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 specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with acute therapy only. Longer 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 bout – an injection into the area of the head where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
