Hello, I am not new to the TN group but this is my first time asking a question. Has anyone used the Facial Pain Help app that is a TN tracker? The app has it is created by ALD Ventures LLC. I would like to download if anyone has had any experience with the app and can give me some thoughts or insights. Thanks.
I haven’t used that app. Personally I’m a little concerned regarding my data and who has access.
But I have used a pen/paper to track my activity vs diet vs medication vs symptoms. I symptoms vary LOTS. I’ve often explained it like this
Some days I could leap a tall building in a single bound But then some days I'm lucky to be able to crawl out of bed I just never know what today will present
But going and explaining this to the medicos I get this look of disbelief, by having it all documented it can show any patterns. It can also show the Dr’s that you are being proactive in your own care.
Merl from the Modsupport Team
Thanks for the reply. My sentiments exactly on fluctuation of feelings. It’s either a good day or not so good day. I’ll continue to research the app. Hopefully someone who has tried it will reply as well. Have a leaping good day!
I have not used the Ap but keeping a detailed diary lead me to find the source of my ATNpain. I detailed what I was doing, the environment I was in, what I ate, what medication I was taking and how I felt. A pattern emerged that certain activities for example turning my head and talking, massage laying down with my face in a face cradle or pressure put on my shoulders flared my pain. While other movements like looking up, turning my head to drive or using a computer would be difficult for me. I also did not respond well to cold weather which lead me to a list of things to avoid and things that comforted me. It took 5 years and a doctor open to look out side the box but I was finally diagnosed with Eagle Syndrome a rare disease where a rogue bone forms at the base of my skull which pressed into my trigeminal nerve with certain positions. Eagles is diagnosed with a ct of the neck and surgery is the only treatment to remove the styliod. I now still have some permanent damage to the nerve but I can control it easily with small amounts of medication and with avoiding triggers. It was definitely worth keeping ghis journal. I printed out a form I made with several days in one page and highlighted different entries in different colors so I could find patterns as I reviewed the journal. Also you forget so much as time goes on it helps to have as a medical record. Good Luck and be strong….