Leaderboard

Hi Jonathan, thank you for your kind workds. Our training lasts for 12 months, it's built around everyone's own life story and the medical condition and recovery from it is in the center of this story - to help others who are still struggling with same issue. We practise presenting our life's story many times, and possibility of telling it in different places and situations with different length. Even a course of performing arts is included ! The best teacher is doing the work when we graduate though. We collaborate with each other a lot but as an EbE we do not speak out (=advice) about treatments since we are not doctors. Our job is to tell our personal experience living with the condition and not advice about possible treatments, when we work at a hospital. Understandable course of conduct but also a balancing act for me, since I am also a patient, peer support, sometimes a friend, member of an association etc. And treatments that saved my life are illegal here but also part of my life's story. I think this kind of training and use of us patients in the heathcare is benificial for everyone, especially in cluster headache not well known at all.

Out of complete desperation, I tried Ajovy for my cluster headaches this past January (2020), upon the recommendation of my neurologist. For me, it was a godsend. It immediately ended my cluster cycle.

thanks @Tony Only. if you don’t mind, i can print this page, highlight the ch and leave it in his mailbox, if i can do so. he lives a few miles from me. geographically-speaking.

REMARKABLE Tony... thank you for being part of that enlightened attitude toward health care....most clusterheads spend years just trying to find someone who understands...and it can get pretty lonesome. Many never find a health care professional who does...so this is just awesome.... Does your system provide any type of training for communicating your experiences most effectively? Do you collaborate with a colleague(s) who have taken different approaches to treatment (meds, mooshies, diet, etc) for the most effectiveness with each patient? regards jonathan