Traveling, socializing, skiing, hiking, a career as an educator. These are just a few of the activities I enjoyed before the diagnosis of Trigeminal Neuralgia (TN) completely changed my life forever. TN brought my world to a screeching halt. The freedoms and pastimes I once enjoyed are now marred by the countless triggers that set off the excruciating pain on the left side of my face; caused by blood vessels pulsating against my Trigeminal Nerve. With the myelin sheath gone, a taser like sensation began shooting across my jaw along with a constant underlying aching sensation leaving me feeling helpless and hopeless.
Since being diagnosed with TN over seven years ago, adapting to the constant pain and agony has become my new normal. Countless medications and surgeries have helped to varying degrees, but nothing has completely relieved the pain. Instead, I track and record, weather conditions, triggers, and pain levels in an attempt to reduce my pain. As of today, there is no permanent cure for TN. Until a cure is found, it is vital that patients and caregivers alike hold onto HOPE.
Hope, it keeps being mentioned, but why is the desire for something to happen or change vital for those impacted by Trigeminal Neuralgia?
- Trigeminal Neuralgia has no cure. I mentioned this previously, but the point is worth repeating. With no cure the 150,000+ people are suffering everyday. No one should be forced to endue pain so excruciating the only way out appears to be suicide.
- TN is a very rare disease. A diagnosis can be confusing and scary with few educational resources available. Additionally, access to proper medical care can be difficult to impossible to find, as few doctors specialize in treating Trigeminal Neuralgia.
- Research for TN is minimal, due to the rare nature of the disease and lack of proper funding. In turn, there are no medications specifically designed to treat TN. Patients are usually prescribed anti-seizure drugs, with side effects that only make life with Trigeminal Neuralgia more difficult.
The diagnosis of TN can leave one feeling overwhelmed due to the debilitating pain. Trigeminal Neuralgia’s nickname of the suicide disease isn’t a joke, as many are unable to cope with the intense pain and look for any form of relief possible. Not everyone is as lucky as I have been to have access to TN experts across the country. Therefore, my mission in this blog is to share my pain and experiences with the goal that others may gain wisdom and hope from my journey battling TN. Whether you are newly diagnosed, have been suffering with TN for years, or are a caregiver for someone with Trigeminal Neuralgia, I hope you will find the information, contacts, and connections that will help improve your quality of life and give you hope for conquering this horrid disease.
Please feel free to contact me with any questions or comments!