Excruciating Pain: My Fight With the Mysterious Suffering of Cluster Headache Syndrome
It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came quick shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.
The headaches returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with severe pain around one eye that persists up to three hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs 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 documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Historical healing records suggest bizarre remedies for what some observers 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 superstitious cures.
It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.
National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.
But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts 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 discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
