This is the first story-starter on FACEing the PAIN.
Please submit your story of the journey to getting diagnosed and how you have come to terms or still struggle to accept having to live with the pain.
Email your story to: tnfacepain@gmail.com --- in the body of the email or as an attachment. We suggest 500 words or so. People will more likely read your story if it is not too long.
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I was first diagnosed after suffering from severe chronic migraines which grew into facial pain and swelling. I was lucky enough to see a senior partner in my doctors office who immediately diagnosed me with TN. I was shocked and scared. I had never heard of it and when the doctor explained briefly to me what was happening, I had mixed emotions.
ReplyDeleteFirst, I was glad that finally a diagnosis was made but I was also blown away when I researched TN and found that it all fit what I had been feeling but yet there was no cure, no clear cut treatment and reading the words "Suicide Disease", wow - it was A LOT to swallow.
I was already seeing a Neurologist for my migraines so I called to see them right away. Of course, the medication trials began. I am not exaggerating when I say it took years to try different meds totaling at least 20 different combinations until Neurontin, Tegretol, Topamax, Baclofen, Percocet and Trazadone became my daily regimen.
My entire life changed and has never been the same. I am constantly in pain. I have run out of "good" days and have tried to adjust as much as I can while still yearning for the time before I felt this way.
I had a Gamma Knife Radiosurgery and a Balloon Rhizotomy which have both failed to relieve the pain. I have one numb area of my lower jaw near my chin but all the rest is the same.
I pray everyday that a cure will be found but wonder if anyone is even working on one.
Thanks to FaceBook and a wonderful group of fellow sufferers, I have an outlet for venting the frustration and grief that comes with TN as well as an incredible new source of information about it and trying to cope with it.
The request here was to share how I have come to terms or if I still struggle to accept having to live with the pain. I am forced to come to terms with TN and how it has changed my life and everything in it but I struggle with this every single day. I don't think I'll ever truly come to terms with it.