Fact or fiction?

I often struggle with the dilemma of sharing my personal journey versus sharing facts. Facts are good, they inform others in a way that promotes awareness and can be seen as educational. Feelings/personal journey are useful for trying to create an understanding of what it means to be living with TN but can be seen as complaining or negativity. I know I have "lost" friends who are "tired" of my social media posts or the way in which I have changed....but I will continue to share as I know that those people were never true friends to begin with. I do think though that I have neglected to personally share facts about living with TN, though I have posted on social media various links and posters to share the information, here are some of the facts I have discovered through research (actual scientific studies and not yahoo answer websites), personal experience and the sharing through support groups I've been lucky enough to find on line.

1. Trigeminal Neuralgia (TN) is a chronic, progressive condition in which the person experiences severe facial pain. The pain is most often triggered by light touch, vibration or a breeze on the face.
2. TN is generally classified in two distinct groups, TN 1 = sharp, electric shock pain that comes and goes. This pain can last seconds or minutes with some people experiencing up to 100 attacks per day. TN 2 = also known as Atypical Trigeminal Neuralgia is almost always a constant, deep, burning pain that "flares" in intensity but almost never goes away. 
3. The literature says that TN is generally a condition that affects those with an average age of 50 or older - The support groups tell a different story with the majority being in the 20-40 range. This year the international awareness day for TN is aimed at raising awareness of the children and teens with TN, that should say enough about how outdated the stats are.
4. Those with TN have to go through a long process to receive a diagnosis, often having teeth extracted and diagnosed with migraines or Temporal-Mandibular Joint pain before finding a diagnosis. There are very few of us who have this diagnosis who have not been ignored, called liars/drug seekers/hypochondriacs in the process. The health care system, regardless of country, is not equipped sufficiently to deal with conditions without clear, curative, protocols for treatment, that is a very sad, very true, fact.
5. Treatment usually begins with anti-seizure medication (Tegretol is the first line of treatment for most) through a trial and error approach for finding the dosage and type of medication that provides the most relief. If and when it is not enough, certain anti-depressant medications are added as they are often used in nerve pain conditions. Narcotics may or may not be added for pain relief but does not work on its' own for most of us. Surgical options are Micro-vascular decompression (where surgical Teflon padding or a similar material is placed between the nerve and any blood vessels causing the pain), Steriotatic Radiosurgery (concentrated, directed radiation to damage the nerve), Glycerol rhizotomy (a glycerol solution injected into the nerve ganglion to damage the nerve), Balloon compression (a procedure where compression of the ganglion of the nerve for destructive purposes is done).
6. None of the treatments can guarantee 100% pain relief or relief that is lasting. 
7. Trigeminal Neuralgia has no cure; it varies in intensity for each person; it is real; it is debilitating; it is not fully understood by MANY health care professionals; it requires research to enable those who are able to help, to know what to do.
8. People with TN have and do lose their jobs as a result of the pain and or side-effects caused my medication. We are almost ALL dealing with family, friends or colleagues who choose not to accept that the pain is real or that it is affecting every aspect of our lives and as a result lose those friendships or support in the workplace. It's a difficult disability to defend in applications for disability cover due to the lack of knowledge and understanding regarding the true impact on functioning.
9. We are determined to find a cure and raise awareness, this is evident in the efforts by many to work on various events for 7 October, the international awareness day for TN.

Finally.... 10. we miss our lives that we once had. Once the progression has reached a point where no remission is in sight, we miss our work, our family events, our exercise opportunities, our simple pleasures such as taking a walk without fear of a breeze knocking us to the ground.

For those interested in more information, visit The Facial Pain Association website. This website provides updated research and support links. For those who are looking for support on Facebook, a good place to start is End Trigeminal Neuralgia a page with detailed information and testimonials regarding treatment.

  There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader