Hello everyone. Though I am new member I have been reading and coming here since 10/10. Oddly enough I need some support but I am not the one with TN, my wife is.
Let me give you some backround....sorry this will be long.
My wife was first diagnosed with TN in 10/10. She was 28 at the time. She is also diagnosed as idiopathic autoimmune since the age of 12 which complicates things.
She first saw the neurologist back in 10/10 who quickly diagnosed her with TN after listening to her symptoms and prescribed Lyrica. After she consulted with her allergist he told her that taking any anticonvulsives with her autoimmune condition would be very risky. After a few days shocking pain in her face was so bad that she was up all night crying and finally the next dayI was able to convince her to go to the ER. (let me not get into how rude the ER doctor was telling her "we cant treat TN just take the Lyrica")
Anyhow they gave her morphine which helped with the pain as she is allergic to other painkillers such as vicodin and percocet....if I recall correctly I think she said something about being allergic to the sulfates. Anyhow, she spent 3 days in the hospital where they tested her for shogrens, lymes disease and gave her an MRI to see if she had compression of the nerve. Unfortunately she is allergic to contrast (and a million other things) so the images may not have been as good as they could be but they came back showing no compression from the artery.
I should also mention that they did a blood lab and found her vitamin D levels to be very low, almost non-existant. She now taked 2500iu of vitamin D daily. We hoped this was what caused her TN but she wasn't so lucky as it came back 7 months later.
They released her with a course of prednisone and some morphine pills, she took the prednisone and took the morphine pills when the pain got bad.
After she was released she went to the dentist to have x-rays taken to check for an absess which also came back negative. She then went for acupuncture for the TN (she has been going for acupuncture for her allergies for years now). She called me after her appointment and told me that after the third needle was inserted the pain went off like someone turned off a light switch. I immediately broke down in tears as I was so happy for her. It really breaks my heart to see her is so much pain. Anyway, she was pain free for hoursbut the pain slowly came back but never as intense as the first time. She continued to go for acupuncture 3x a week for several weeks, every time she would be pain free longer and longer until finally the pain did not return. She continued to go for acupuncture for allergies but they did only 2 points for the TN. (Apparently they cannot do all of the allergy points with all of the TN points together)
6/11 her pain returned, not as bad as the first time but significant enough. She went back to acupuncture to do the full blown TN treatment and again like the first time after several visits the pain became less and less until it was gone. She continued to go 1x a week for allergies but only 2 points for TN.
9/6/11- her pain returned again and she is going for acupuncture again for the full blown TN treatment.
A little about me,
I am 31 and an only child. I lost my dad when I was 17. My wife, mother and grandmother are all I have . I am here to share my knowledge & experience and I am also here for giving and receiveing support. My wife does not like forums and refuses to keep doing research but I love her and I am willing to do research for her until my eyes and fingers bleed. I have had several major medical problems myself, 4x my lungs collapsed spontaniously, each was a week in the hospital where my wife sat by my side day and night and slept in a chair. I also had my thyroid removed in 2007 because I found a lump that turned out to be malignant. Again my wife sat by my side and did everything for me.....now its my turn to be there for her.
For myself, I am here because it sickens me to see her like this and I dont know what else to do. I literally get so upset that I get nauseous, cannot eat, get hot and cold flashes and butteryflies in my stomach everytime she puts her hand on her face. I cannot enjoy doing anything because I know my wife is in such miserable pain. I cannot enjoy my life and I am constantly thinking about her. I can see that I am irritating her by constatly asking if she is ok, or needs anything.....does it hurt more or less and a thousand other questions and suggestions...I just want to help any way I can.
OK sorry for the book I just wrote, I am going to stop for now but that is the jist of our story. I see many others here affected the same way by this terrible illness. At least I know people on this forums understand our pain, I am glad I found this site.