Well I was diagnosed with TN at the ER after a second trip there with pain that I couldnt get to subside. I went to my family dr with just a flicker of hope that I was misdiagnosed and there was some other underlining problem causing me all of this grief. I was hoping for something on the more, be gone in a week side. Well he broke my heart and confirmed the first dr's opinion. Now that I know this is the challenge im up against I have decided to embrace it. Not only do I have no other choice but I have worked to damn hard in his life to let TN rule it for me. So today im approaching this battle with a whole new attitude. Screw you TN you will not win, you may always be here lurking in the background waiting for your chance to tear me down, but I refuse to lie down and die with you. Im dusting myself off and continuing on in my life! (with a little help from my meds lol)
Yay go you! That's a great attitude. It's always heartbreaking to think maybe they can't fix this! Most things nowdays doctors seem to be able to have some sort of cure for after all. Hopefully some people reading your post will be encouraged to not let TN rule their lives. Some days it'll get you down no doubt but on the good days rejoice that it's a good day :)
I totally echo Porcelina, keep that attitude, it will serve you well.
For the longer term, I would also offer a hope of better pain management. A group in the UK has just started a small Stage II trial for a medication that selectively suppresses a gene which is specific to the trigeminal system. Results with migraine have been good, and we should know within a year whether this medication is safe and effective for facial neuropathy patients, with lower levels of systemic side effects body-wide.
Hang in there, Heather. I agree that your attitude is great.
Go in Peace and Power
Red
I so share your sentiment. Right now my pain is hitting every few minutes and kept me awake most of the night. My meds are not touching it. Luckily my neuro appt is today at 9:30. I also am so tired of crying over the pain I just get mad at it. I have a great family, a great job, and am very active. I wont let this ruin all that.
Red, Hope is so important thanks for that
Woo Hoo, is all I can say about your news Red, lets all cross fingers, eyes and anything else we have.......
Richard A. "Red" Lawhern said:
For the longer term, I would also offer a hope of better pain management. A group in the UK has just started a small Stage II trial for a medication that selectively suppresses a gene which is specific to the trigeminal system. Results with migraine have been good, and we should know within a year whether this medication is safe and effective for facial neuropathy patients, with lower levels of systemic side effects body-wide.
Hang in there, Heather. I agree that your attitude is great.
Go in Peace and Power
Red
Heather, you go girl. That is an awesome attitude to have and wish that my attitude was like yours. Some days I feel like that but other days I can barely stand to think because of the pain. You are an inspiration. Keep it up.
Thanks guys and it took me a couple weeks to get my positive attitude back. I was letting it tear me down where I was no longer enjoying my job, school, or babies. I realized the other day what a toll my disease was taking on my family and coworkers and decided screw this! There are days that TN has greater power than me and it wins for a day or so, but thats when I realize im letting it rule my life and I need an attitude adjustment. Its not always easy to look at this positively but I have to. Im only 25 and im plagued with a pain that is never going away so either I waller in my misery for 50 years or try to take the positive out of it and keep on trucking. I decided to embrace it and use it to make positive. It happened for a reason and all though I do not know Gods plan he has one :)
Greetings Heather,
Your post is very inspiring and your attitude is the best. Your positive attitude not only helps you but also helps others around you and can help those who read this post. Stay strong.
I hope you and all tn'ers have many better days ahead.
Scott
That a girl!! I have said many times this is my life. You can't have it TN.
Great saying Min, mine is " I have TN, but it does not have me!!"
Min said:
That a girl!! I have said many times this is my life. You can't have it TN.
Oh Yeh... That's a good one Jackie!! :)
Have you read the book Striking Back? It has so much great advice and so many different treatment options in one easy place!
This is one rollercoaster ride I do not remember standing in line for!
Very good attitude!! I need to see others who are choosing to have victory over this if in no way but attitude :-) blessings~~
Awesome-sauce, Heather!
Hi everyone..I've been reading many messages on here..I'm new to this..I've only been diagnosed last week and I'm on Tegretol..You mean to tell me I will have bad days??:-( thought the meds would work and I would not have any more pain..ahhh darn...
well I am having my MRI end of June-probably nothing will show as I've heard that it's usually clear..
I've been taking 600mg of tegretol and boy am I tired and drowsy at times..I work in a medical office where
I deal with the public..Hope this gets better in time. I'm glad there is support here..I need it. :-)
- AWESOME
You will have breakthrough pain I think no matter what you take. Its a strong condition that seems to find its way to you no matter what your taking. My experience with tegretol so far is I actually have pain free days which were non existent 2 months ago but my bad days are worse than they were before!
Miche56 said:
Hi everyone..I've been reading many messages on here..I'm new to this..I've only been diagnosed last week and I'm on Tegretol..You mean to tell me I will have bad days??:-( thought the meds would work and I would not have any more pain..ahhh darn...
well I am having my MRI end of June-probably nothing will show as I've heard that it's usually clear..
I've been taking 600mg of tegretol and boy am I tired and drowsy at times..I work in a medical office where
I deal with the public..Hope this gets better in time. I'm glad there is support here..I need it. :-)
One small addition to Heather's input if I may: "You might have sharp breakthrough pain SOMETIMES." Response to the medications used to control trigeminal neuralgia pain is highly individual, and the severity of breakthrough pain is likewise.
Regards, Red