Tegretol just had it increased to 120 mg a day and just hate side effects
Hi Amanda, 120mg is a very low dose, did you mean 1200mg? I was taking up to 1200mg per day before MVD surgery a couple of years ago and starting to affect my liver. Plus I really couldn’t function, dopey, drowsy etc. now on 200mg twice a day, and recently started on vitamin B12 supplement. I think the B12 is helping.
I just started on tegretol about 3 weeks ago. I'm on the extended release 200 mg a day. The side effects are rough, but I was told that they get easier once your body adjust to the medication. I'm always tired and dizzy. I'd rather take that over the pain any day. My doctor said that we could try other meds if it was too much for me handle but I'm more afraid of the pain coming back. I wont chance that. Good luck to you.
I started tegretol last Wednesday and I am taking 200 MG 3 times a day so 600 a day. My only side effect is I get sleepy if I get still. Am I on too much? I see all the post with way less. I am concerned!
Hello everyone and Duckie I have a question for you too - okay first I got TN back in 2004 - had the balloon thing that failed in 2005 went on Tegretol for ten years and just had MVD surgery. Wanted to say I hated the Tegretol the entire time and was up to 1200mg at day by the time of surgery - I used Excedrine Migraine to combat the headaches it gave me and that helped quite a bit. Lyrica also helps. Duckie it would be great to know how you are doing since your surgery. I had the MVD June 10 and as of July 1, 2015 I am TN free however the whole right side of my head is numb including eye, nose, lips, tongue and throat. Dizzy. Vertigo. Nausia. No ear problems. Right eye vision a bit blurry. Minor pain / meds. Otherwise well. Some people have come out with none of this, others all of it, some got better, some didn't. It is very hard to read what is going on in this forum/blog and to keep track. Please reply but also copy me to nicolemardin@hotmail.com thank all of you so much. Nicole in VT
Duckie said:
Hi Amanda, 120mg is a very low dose, did you mean 1200mg? I was taking up to 1200mg per day before MVD surgery a couple of years ago and starting to affect my liver. Plus I really couldn't function, dopey, drowsy etc. now on 200mg twice a day, and recently started on vitamin B12 supplement. I think the B12 is helping.
Hi Nicole, after MVD I took a couple of months to come off tegretol completely, but much lower dose than before surgery. About 2 years pain free, then twinges returned, then got a lot worse very quickly. GP tried Endep, that sort of muffled the pain, but neurologist put me back on Tegretol. 200mg twice a day, and a very supportive employer reducing my workload has the TN pretty much under control. Couple of stress related breakouts. After surgery I had some trouble with dizziness, balance and pain at surgery site. They gradually disappeared and I was back to work fulltime after about 6 weeks. The surgery site felt funny for a long time, with headaches there with change of weather, but better than TN pain. Hope you remain pain free!
Nicole in VT said:
Hello everyone and Duckie I have a question for you too - okay first I got TN back in 2004 - had the balloon thing that failed in 2005 went on Tegretol for ten years and just had MVD surgery. Wanted to say I hated the Tegretol the entire time and was up to 1200mg at day by the time of surgery - I used Excedrine Migraine to combat the headaches it gave me and that helped quite a bit. Lyrica also helps. Duckie it would be great to know how you are doing since your surgery. I had the MVD June 10 and as of July 1, 2015 I am TN free however the whole right side of my head is numb including eye, nose, lips, tongue and throat. Dizzy. Vertigo. Nausia. No ear problems. Right eye vision a bit blurry. Minor pain / meds. Otherwise well. Some people have come out with none of this, others all of it, some got better, some didn’t. It is very hard to read what is going on in this forum/blog and to keep track. Please reply but also copy me to nicolemardin@hotmail.com thank all of you so much. Nicole in VT
Duckie said:Hi Amanda, 120mg is a very low dose, did you mean 1200mg? I was taking up to 1200mg per day before MVD surgery a couple of years ago and starting to affect my liver. Plus I really couldn’t function, dopey, drowsy etc. now on 200mg twice a day, and recently started on vitamin B12 supplement. I think the B12 is helping.