Meet Ken, 63, sharing his lifelong struggle with cluster headache. For over 20 years, he’s faced recurring attacks with minimal relief or answers. His condition is episodic, and the duration of his attacks varies. When the attacks began, Ken’s headaches occurred only once a year. Since then, his longest attack lasted two years, and his most recent attack lasted seven weeks. This is his story.
Working to Understand His Condition
Ken describes his pain as similar to the “brain freeze” feeling when eating something cold. The pain is sharp, localized in his temple or forehead, and behind his right eye. Ken explains that his headaches feel like a “flip of a switch,” with a sudden onset of pain on the right side of his head. His cluster headaches only start at night, which impacts his ability to fall and remain asleep.
Working to Understand the Triggers
As the severity of his headaches is not linear, Ken records his attacks on a scale of Bad, Very Bad, Very Very Bad, and Very Very Very Bad. Using this scale, Ken strives to build a correlation between the attacks to identify possible triggers and, from there, potential solutions. Unfortunately, he has not been successful in determining any links.
Impacts of His Cluster Headaches: Barriers
Cluster headaches have significantly impacted Ken’s personal life, relationships, and employment. The severity of his attacks is extreme, and he is unable to be around anyone during an attack. His relationship with his wife and friends has been affected because he has had to cancel plans with loved ones. Although Ken is currently retired, when he was employed, his nighttime flare-ups meant that he wasn’t able to sleep, which impacted his productivity at work.
Ken believes his support gaps are due to the inaccessibility of the healthcare system and his physician’s lack of understanding of cluster headaches. Ken noted that his doctor has offered little support, with the only treatment recommendations resulting in intolerable side effects. Ken feels alone and solely responsible for doing his own research to understand his condition. He believes that because physicians do not understand the severity of cluster headaches, they do not place any urgency on providing support. He has been waiting months to get confirmation for a CAT scan, and because he is currently experiencing a flare-up, he feels the urgency to get the scan now to better understand his condition. Once this flare-up ends, it cannot be predicted when it will happen again, and it will be unlikely that the scan will coincide with the next episode.
Current Forms of Support: Medications, Treatments, and Coping Mechanisms
Despite the lack of support, Ken has worked hard to understand his condition. He has tried multiple forms of medication, treatments, and coping mechanisms. Over the last 20 years of living with his condition, Ken has found only one medication that has worked for him: oxygen therapy. When he feels an attack, Ken uses his machine, which consists of two oxygen tanks combined (20 L) for 10-20 minutes, to feel better. Ken stresses the immediate relief oxygen therapy provides, as it reduces the duration of his attacks, allowing him a brief sense of relief and the ability to sleep. As Ken is unable to stay still during these attacks, another coping mechanism he uses is to rock back and forth, rubbing the sides of his head. This has also been effective in relieving some of the pain he experiences.
Ken’s Note to You
In working towards overcoming these attacks, Ken stresses the support of oxygen therapy and urges individuals experiencing cluster headaches to consider this treatment option. Ken believes there needs to be more research on cluster headaches. This is important for both individuals experiencing cluster headaches and the healthcare system to become more knowledgeable about the impacts of this condition, how to support individuals experiencing these attacks, and effective treatment options.
