What I have learned through this experience is that there truly is a pain beyond anything you could ever imagine. A terrorizing monster pain so extreme that the fear of it coming back would exceed that of your worst nightmares. There is a pain so severe that many individuals do consider, and even follow through with, ending their life to make the pain stop. Although I am proud of myself for treading on through this disease and the many others I have, it causes me great fear and anxiety, worrying when another attack will occur. I have also learned that we as humans can survive through even the most excruciating and most intense pain imaginable. I have.
I now belong to support groups for others with this same disorder. Individuals struggling with this horrible disease really do need support. Most people, including myself up until diagnosis, have never heard of trigeminal neuralgia. People who are afflicted with this horribly painful disease need love, support, understanding and better options for treatment. More physicians (such as the one I had in the ER that night) need to be informed regarding the symptoms of trigeminal neuralgia.
If you know someone with this disease, please become educated on what they are going through and provide them with whatever support you can. If they tell you they can’t take it anymore, please believe them and help them get support. As many chronic illnesses are, trigeminal neuralgia is an invisible illness on the outside. Sometimes what people cannot see, they do not believe. Having struggled with this disease myself, I can tell you the pain from this disease is very real and beyond anything you could imagine. The people who struggle through this disease are so incredibly strong and have become an inspiration to me.