hi all,
i have now been on tegretol for 5 weeks now and i am still having really bad pain days i am taking 300mg a day i am supposed to be on 400mg a day but i feel too tired on that much and i have also been having really bad hemi facial spasms as well its not been pleasant! other than that i am well, this is one for the girls i have also noticed that the tn seems particularly bad around my period the few days before and all of my cycle does anyone else notice this??

boy you are on that meds wheel i am sorry the teg isnt helping as much as it has for others .
Heck I just have a ball when aunt flo comes to visit lol. some months worse then others I get worse head and face pain then but I dont think it is like that for all of us some I dont think notice a change at all.
What has Doc said about your spasums? dose he have a game plan of any kind to help controll it?
oh yeah i think i got up to 2500 or 2800 mg of neurotin a day when i was on meds didnt help pian . i have been switched from med to med to combos then final off and just have stim.
Hope you get controll and feel beter soon. IT IS GOOD TO HEAR FROM YOU. Thanks for keeping us posted.
Stay warm
Peace.

i should have probably said that 4 out of seven days in the week arent too bad the pain level is on about a 6 out of 10 then others its about a 9 out of 10,depends on the weather and what i am doing that day i had a friends 30th birthday today it is 14 degrees here today and we were outside my face got cold and i was really feeling the pain i had 4 capadex as well as my tegretol today not very nice i had to come home early it really sucks sometimes you just want to enjoy yourself and you just cant! i get really upset when it happens when i am out its just not fair sometimes! i have to be thankful for some of the low pain days and the other thing is i hate having to explain why i am leaving early most of my friends know and understand but some that i haven't seen for a while have no idea what has happened and i have to go through the whole story of bell's palsy why it happened and what tn is and how that occured i dont know just need to air the situation with all of you!

Yes I have had this since1999 and I am sooo over trying to explain and so tired of telling my " story" on how I got this..my stim what it dose etc..
Most of the time ya get that what the heck are you talking about look.
I was so afraid with certain things like going out and speaking to people and eating with people even my family.. all things i have had to work on to over come. If a flare up hits me i just excuse myself and tell them I wil explaine later. I dont think it is fair to worry what others will think of me when that happens because they most times dont worry about me or understand so worring is a waste.
I hope you have a smiley face today and your pain is low and spasms not happening today! Keep hanging in there things will get better.
Keeping you in my thoughts Melina .
PEACE
BMW

Ya Know,..it's kinda nice to know that some other gal is seeing a connection with the increase of TN pain and the monthly hormone fluctuations
Years ago, when I was first starting into menopause & hot flashes, I mentioned to my family doctor that I had noticed my TN increasing on the days when the hot flashes seem to be "every hour on the hour whether I need them or not" !!! He just frowned and said "I doubt if there's any connection".
Now, here I am yrs down the road....there still seems to be some sort of relation between the two. I'll go for WEEKS without any hot flashes, and when I get where they're very bad, the TN pain increases. Who knows, I sure don't get it!!! LOL



Marilyn

i get the what the helll are you talking about look all the time? i just feel like crying when i have to explain again mostly it comes up when people ask me if i am still hairdressing and i say yes from home they look at me like whyyy! and then i explain my situation and i think it makes them feel bad for asking and they wonder why they asked because it takes sooo long to explain what it is! but i guess evey single one of us go through that! it just gets upsetting i am having a fairly low pain day today but the spasms are playing on me today! thankyou for making me see the bright side of things and sorry for having a whinge!

Hi Marilyn,
i am glad i am not the only one too! i just thought it was me but i dont think the docs have much of an idea about our monthly cycles or menopause if they are male! Even though they know what it is they dont experience what females do! lol imagine what they would be like if they did lol i think it would be great for them just to have it once lol!!

Hi Mel. I just was wondering how you are doing the last few days?
I know that there is not much that can beat being able to share with someone else who knows it kinda makes the aggravtion and stress a bit lower. How is the cold there ? Do you need to cover face from the cold?
I have to . So I send some warm sunshine healing and of corse ,
PEACE to you .
BMW

Hi Bmw,
the cold really gets to my face and makes it worse i try to wear a scarf when i am outside and it takes a long time for the pain to go away when i come back into the warmth! the temperture is about 17 degrees during the day at the moment and it is about 6 or 7 degrees over night the wind is freezing and goes straight through you! other than the pain i am ok no hemi spasms the last few days which is nice! how are you feeling? i hope you are well!!

mel