Ayer…with Trileptal you gotta have blood work mine got so low I almost passed out when to the ER they have me sodium …Good luck
Spikiegirl…I totally agree its a devil med… I had blurred vision I called my Dr and told him I’ve gotta get off of it do they put me back on Trileptal and I taking sodium tablets also…good luck
I also could not take the tegretol I was really hoping it was going to be my "miracle" pill and my neurologist told me that I would be able to take it and go on with my normal life umm not!! It made me a complete zombie I couldn't move off the couch I was drooling I couldn't hold a conversation couldn't keep my eyes open double vision my tongue swelled up I got itchy all over incredibly cranky dizzy and was running into walls there was no way that I could continue taking it and live a normal life it did take away the majority of my pain but I would never be able to leave the house again if I continued to take it. I am now taking the neurotin and percocet for breakthrough pain and although it is not the best at least I am able to function
hi i have been taking tegretol for over two weeks and for me it has helped im not totally pain free but it helps take the pain level for me to a 3 .after going through this for 30 years i feel that this a break through .about the med it makes you feel doppy at first and you need to watch for other side effects the doppy feeling went away for me and you have to have your blood checked .take care good luck
I am on 600 mg per day of tegretol which completely eliminated my pain. However the side effects (drowsiness, fatigue, unsteadiness) have me looking for a procedure such as gamma knife that could get me off the medication. I'd love to hear from anyone who had the gamma knife surgery procedure.
Interesting about the tongue thing. Since I've been on 800 mg daily, my tongue feels big (but it's not swollen at all) and it feels like pins and needles. Also, this is embarrassing, I've caught myself drooling about 4 times. SO EMBARRASSING! I think it's because my tongue feels so weird and because I'm kinda out of it. Not happy about this. It's not helping enough to deal with all of this. I can't wait to talk to the surgeon about MVD on the 20th.
hcshmily said:
I also could not take the tegretol I was really hoping it was going to be my "miracle" pill and my neurologist told me that I would be able to take it and go on with my normal life umm not!! It made me a complete zombie I couldn't move off the couch I was drooling I couldn't hold a conversation couldn't keep my eyes open double vision my tongue swelled up I got itchy all over incredibly cranky dizzy and was running into walls there was no way that I could continue taking it and live a normal life it did take away the majority of my pain but I would never be able to leave the house again if I continued to take it. I am now taking the neurotin and percocet for breakthrough pain and although it is not the best at least I am able to function
With a dr not calling you back
That’s a red flag… Becareful with seizure meds hon… Just keep calling them until you get an answer. Remember it’s your body you know …good luck… God bless … Btw if you continue on this med be sure you get your labs done… It’s good to
Pull your sodium out…
Tegretol also made me have double vision and I was also walking into walls as one person said. I HATE the med but I am taking it at the moment along with Neurontin. Guess we'll do about anything to NOT have the pain!!
I’ve got appointment in Indianapolis with a Dr that does Boxto got TN…
I wanted to add that when I first started on Tegretol ( almost 10 yrs ago now) I ended up switching ( in my 2nd month) to the extended release form which eventually made a difference in my pain control.
Just a thought for those of you trying Tegretol ( carbamazepine) for the first time.
There is this one very specific spot that the Botox completely gets rid of the pain. It's so nice not to feel pain in that one spot for 2-3 months!! I wish it did the same thing all over for me!
I hope it helps you Donna! Positive thoughts. :-)
My I ask where that place was… Mine is along the bottom cheek line… Thanks Ihold 
Worked great for me for a while, but my TN was surgery kind. I took all forms of the seizure medicine. All made me tired and i gained weight. I would just sleep all day. It worked for a bit, but like I said mine was the surgery kind, which is why it stopped working.
Best wishes
Whst kind of surgery Jess?
Donna,
The spot that the Botox helps the pain is this horizontal line on my temple between my eye and ear. The only way I an describe the pain there is like if there was a superficial vein going through there and someone has replaced the blood with acid. (I don't know where we get these descriptions! lol) The Dr does not inject on that specific spot, but wherever else he injects, it helps there.
Ihold . Does he inject along the jaw?
At this point I am giving up on medicines!!! The Neurontin and Tegretol are making my life a LIVING HELL!!! Not that having TN pain would be a greater option!! I told my neurologist that I was stopping both medicines and he wasn't very helpful whatsoever. I feel SO ALONE!!! I hope I just go to sleep and never wake up!!! That's the point I am at right now............
I like it but have to take 4 a day for it to work along with 3 neurotins my vitamin d stays low also.But works well no side effects eccept the vitamin D.
I know what you mean i feel that way sometimes too.
spikiegirl said:
At this point I am giving up on medicines!!! The Neurontin and Tegretol are making my life a LIVING HELL!!! Not that having TN pain would be a greater option!! I told my neurologist that I was stopping both medicines and he wasn't very helpful whatsoever. I feel SO ALONE!!! I hope I just go to sleep and never wake up!!! That's the point I am at right now............
Do one of the procedures one side of your face might be numb be better then nothing at on… If your Nero not that interesting dumb him get a new one… I’ve been on alot of meds also but we can’t give up… I will be praying for you both … I’m having good luck on trilepel and this is my 3th time back on… I was having a sodium probably that’s why they changed it but now I take sodium supplement … God bless