Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

well guys,
ive finally had my neuro app and he has diagnosed atypical facial pain,and the meds i was on i have to wean off them then in 2 weeks i have to start tegretol retard,even though ive been on them befor and side affects were horrendous,so now because ive started weaning off my meds ive got the jitters ,the pain is unbearable.im having major anxiety attacks several times a day,cant stop crying ,
my neurologist was not very nice ,and i feel he just fobbed me off,am so depressed

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Comment by Jo on March 13, 2009 at 10:09am
Hi Lizzie,

Tegretol retard is the slow release form. It releases slower into your system.

Normal Tegretol just releases all at once, so the effect can wear off quicker.
Comment by liz on March 13, 2009 at 5:19am
hi all ,
thanks for all ur replies ,i am seeing my own gp on the 22nd march,that was the earliest i could get to see her !!!!!!!!!!!!!!!! ,feeling weird reducing the lyrica,still getting head jitters but i have some diazipan to help calm me down.
i just cant get over how ignorent the neuro was ,it was a case of take the tegretol or nothing,does anyone know the difference between normal tegretol and the retard one?
in this day and age no-one should have to suffer with this pain,sending big hugs to u all xxxxxxxxxxx
Comment by Jo on March 12, 2009 at 11:54am
Dear Liz,
I know how long you waited for this appointment and for if to go like this well what can I say.

I can't take Tegretol Retard either. Can you take the normal version. I find it much better.

You are entitled to a second opinion and I would start the ball rolling now. Obviously this "person" is useless and you need a more sympathetic ear to listen to you. I can't believe what has happened the past couple of days with you and K.B. I'm at a loss what to say to her. I'm having a particularly rough spell at the moment, the worst since this nightmare started and the thought of my long awaited appointment now just fills me with dread. Most of the Neuro's in the UK don't seem to give TN the attention it so deserves.

Will let you know how I get on, don't hold your breath!

Thinking of you Lizzie, take care,

Love Jo X x
Comment by Liz K. on March 11, 2009 at 10:26am
Find another one. If your neuro has seen anyone with this pain, then he should know what the pain is like. I would find another one.

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