I didn’t want to start Tegretol but I’m having such a bad day today that I’m considering starting it. I see my doctor today and will discuss it with him. Thanks in advance.
Hi Pacey
I am sorry you are having such a crappy day-especially on Valentine’s day.I wish I had an answer for you.I could not handle the trileptal-but for me it took the pain away within a couple hours-but I have bizarre reactions.But for people who can take it ,it is almost a miracle.
Fingers crossed that it will be the miracle that you need.
Hugs and more hugs.
Hi ellen5,
Thank you so much for your good wishes and hugs. I’m sorry the Trileptal did not work out for you. I did see my doctor today and he prescribed Tegretol. He thinks it should work right away. He was hopeful and so am I even though I did not want to take another drug. He started me out on 100 mg twice a day and said I could go up to 400 mg twice a day. He wants me to wean off the 900 mg of Gabapentin in the next couple days.
Fingers crossed and prayers going your way.Let us know how it works.
I started with 100mg twice a day and it started working within two hours. Others have reported that it took a few weeks and they had to increase the dose before they felt a real difference.
Pacey: When I first went on Tegretol it worked well within a day or two. However, I started at the 600mg/day level. Was on it then Neurontin (same as Gabapentin) and Baclofen. Had a MVD and pain and drug free for 4 years when pain returned. Stayed on drugs for more years then, suddenly, went into remission about 11years ago and am still there. I weaned off all drugs. I was taking 900mg/day of Neurontin/gabapentin also. Weaned off it pretty quickly about 100mg at a time. Good luck and hope the Tegretol does the trick. Just get liver enzymes done routinely.
Toothache and Allan,
Thank you for responding. I am going off the Tegretol - just could not tolerate the nausea. I will go back up on the Gabapentin. My doctor said if the Tegretol didn’t work that I could go up to 2800 mg per day on the Gabapentin. I was also getting headaches and body aches on the Tegretol. Not sure what I can do if the higher dose of Gabapentin doesn’t work.
Thanks again for responding.
Hi Pacey,
The Tegretol made me nauseous too but that went away after a week or so. I hope the Gabapentin works better at a higher dose.
Hi Toothache,
Thank you. I’m glad the Tegretol is working for you. I even have Ondansetron and that didn’t help with the nausea.
Hi Pacey
I am sorry it did not work.
I am taking a break from the trileptal and if I start up again it will be in much tinier doses and with lots of gatorade and gravol and soup around.
I hope the gabapentin works at the higher dose.
Elaine
Hi ellen5,
I’m all over the place with this. Now my doctor wants me to try Trileptal. I will try it but I’m not hopeful with these meds now. If this one doesn’t work I’m thinking of trying to go off all of them if I can stand it. He prescribed 300 mg twice a day but I’m wondering if I should cut them in half. I’m afraid I will get nauseous with this med because it is similar to Tegretol.
Hi Pacey
That is what I did.Still not small enough for me.I should have cut them in 4.Someone suggested drinking lots of gatorade-that is why the nausea.
I am so sorry.I wish there was magic pixie dust to sprinkle on you to make it all better.
My doctor now wants me on tegretol.
maybe we can swap meds?(just kidding moderators)
The neurologist wants me on lyrica but my family doctor won’t do it because he says there is an interaction between gabapentin and lyrica.
He gave me a little note to bring to the neurologist.My appointment is over a month away.That note will be long gone by then.
Please be careful about stopping meds.
When I tried the amitryptiline for a couple days and then stopped the pain seems to ricochet back up.
I find tylenol 3 ,with a bit of gabapentin and some over the counter muscle relaxants takes the pain down a few notches for me and allows me to function.My bowels can handle the codeine.My bowels cannot handle the anti-depressants.
Please go slow with the trileptal.And maybe have lots of gatorade.Something to do with the drug using up the body salt or something like that-binding with receptors.
Keep us posted.
We gonna be OK
Hi ellen5,
You are so kind. Thank you so much for all the information.
Today was the worst day I’ve had so I didn’t know what to do. Finally took 150 mg of Tripetal. I’m feeling a little better but don’t know if it is the med because I tend to feel better at night and early morning. So far no nausea.
I tried Lyrica when I first was diagnosed with this and it didn’t work for me but I know it’s a good med for many people. If the Tripetal doesn’t work I’ll ask my doctor about trying Lyrica again since it was 3 years ago when I first tried it.
I’m glad you found a combination that helps you.
Hi Pacey
I hope you are doing better today.I so hope that it is working.
My combo is something that helps-but doctors role their eyes at it.I need something better.
Off to a specialty dentist on Tuesday to go over everything.Still not 100% sure in my mind that this is not a dental problem.So that will be another 300 bucks.
Have a great weekend
Hi ellen5,
Just want to wish you a great weekend also. Hope you find something that works better for you.