Hi. I am on a high dose of Tegretol, 1600mg, and have been for over two years now. My blood tests have been fine. So far. Now, I'm also on 800mg of Gabapentin. And still having a lot of pain. I'm wondering about making a switch to more Gaba and less Tegretol. Anyone have experience doing that? Tegretol has saved my life these last few years but I don't want to raise my dose any higher and I don't want to be on high levels of two drugs. So I'm just wondering what I have to do if I want to be a Gaba girl for a while.
Hi Faye,
Just my experience but I too had much success with Tegretol, my pain was managed for two yrs at 800mg until this past spring, I too am at 1600mg ( this is my max dose, blood tests have been fine but doc says this is it) and was still not getting pain relief, I tried adding Neurontin, but I didn’t tolerate it well, weaned off and added Baclofen at 10mg doses every 3-4 days.
It wasn’t until last week when I got to 50mg Baclofen that I FINALLY after several months had relief!! My pain on Wednesday was at a 8-9 ( and has been for past 3 months) by Friday I was a 1-2!!!
Baclofen works as a booster to Tegretol. I have maintained a 1-2 pain level ever since Friday, and I’m over joyed.
Maybe something to bring up with your doctor as an option to try?
I had a little drowsiness and a few days of nausea each time I increased the Baclofen. But well worth it.
This of course is just my experience, we all react differently…
Good luck to you, hope you get relief soon! ((( hugs ))) Mimi
Mimi, I am so happy to hear you've finally got some relief! I'm sorry it took so long to find the right amount of meds. I hope your pain goes all the way to zero. And stays there!! I just came back from seeing my neuro and she, too, gave me an rx for Baclofen, starting at 5mg but with enough pills to take myself up to 10 mg, 4 times a day. She said that the Tegretol/Neurontin combo isn't really preferred (but a couple of months ago, she thought I wanted it instead of Baclofen, not sure how that happened.) Anyway, she said to take all three meds (zombie-ville!) until my pain is controlled and then wean off the Neurotin. She also told me that it's time to think about surgical options. So I'm sad, and feeling defiant today. My intense pain, which has lasted for a week now, feels a smidgen better. I know because at some points during the day, I can eat, and I'm eating everything I can get my hands on! Yikes. So, I'm going to see if it keeps improving and resist the Baclofen as long as I can. We'll see. Thanks for letting me know about the nausea. Keep feeling good, Mimi!
Hi Faye, ya, I was on all 3,as I weaned off the Neurontin and added the Baclofen…its really amazing to me that just 1 more 10mg pill has made such a huge difference. Crazy.
I too started looking into surgery the last few months…you do feel sad, defeated, hard to avoid…
Go check out the MVD group and read my latest post…I’ve done an incredible amount of research and decided to go ahead with the MVD. It’s a personal choice…
Read as much as you can about all the options, talk to a few neurosurgeons and then once you’ve put it all together you can make an informed choice.
And not a choice born out of desperation…that was my biggest worry, I had some pretty horrid weeks, my pain hit 10 a few times and during those times I was begging, for my life, I didn’t want to make such an important desicion while on my knees desperate for help.
Hope you get some relief soon my friend, keep in touch!
Mimi