Unbearable Suffering: My Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It was a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain sprang behind my right eye. It was followed by quick jolts, like lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort around one eye that lasts for three hours.
About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Still, the failure to plan life around unpredictable pain took its toll. She especially hated 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 incapacitation caused by the worst episodes. “It robs you of the simple 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 portable toilet.
Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.
Ancient healing texts propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially recognised by global headache 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 which delivers blood to the head. Leading experts in diagnosing the condition note this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition 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 teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen treatment and medication until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.
But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
