I agree with Red, everyone’s response and course is soooo different.
Up until 6 weeks ago I was relatively pain free for 2 yrs on 800 mg of Tegretol. I would have occasional breakthrough pain, BUT nothing major. Also, when starting or increasing my Tegretol dose, it usually takes me about 2 weeks to get settled with the med. Again this is how “I” respond.
Having a positive attitude is HUGE! However be sure to not be too hard on yourselves on the bad days!
TN pain is like no other and it takes a lot out of us . I become very irritable and very short tempered. My family knows this, I still apologize though every time.
Also, I had TN for 8 months back in 2002 and then managed to wean off the Tegretol and not feel TN again until 2010! That’s 8 years with no TN!
TN is so different for everyone, sorry to hear of your dx! But I wish you many pain free days, (( hugs )) and continued positive thoughts!
Richard A. “Red” Lawhern said:
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.
I wish my daughter could grab hold of that attitude but she has already been thru the surgery on her brain and all the meds, a list so long I can't say them, and she refuses to have the Gamma Knife surgery because that is considered the second best and sh already had the so called best. I wish I could do all this for her.
I want to get back to my everyday workout, playing racket sports and golfing. Will that ever happen. When does the meds (Tegratol) get easier to deal with. I'm dizzy, off balance and very tired. I'm too energetic for this!
I am also on Tegretol and I hate it. The pain is better but I'm so tired and off balance. Can't do sports or drive. I am ready to quit!
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. :-)
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 :)
mommyheather -
you have my admiration & respect. I feel rather humbled b/c I’m twice your age & don’t have it as"together" as you. I need to cut & paste your comment & put it on my mirror. thank you.
I do believe that within the next 10 to 15 years there will be developments which will mean the quality of life will improve for people with TN. Research is happening now. This gives hope to us all, but especially for young people like Mummyheather x
Ok so I guess that means I am 50 and I have been having a pity party of total frustration!! I need to take this and rub it all over my head until it sinks in!!!! blessings~~
mommyheather said:
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 :)
Oh Lord help me I pray that you are right!! blessings~~
elstep said:
I do believe that within the next 10 to 15 years there will be developments which will mean the quality of life will improve for people with TN. Research is happening now. This gives hope to us all, but especially for young people like Mummyheather x