Hi all, tomorrow I'm going to my first neuro appointment. I was wondering if any of you can help me with what meds to add. I tried Tegretol and had a bad allergic reaction...my doctor then put me on Gabapentin and the side effects are awful with this. I want to ask her for a different med and something for sleep since my doctor stopped my Ativan....does anyone have any ideas? Thanks in advance...Lauren
Hi what your issues you having?
Hi Lauren,
I just started taking baclofen, which is a muscle relaxer, because I can't take tegretol (allergic) and neurontin doesn't work. I have atypical TN, and just can't find the right med for me. The baclofen helps me because I clench a lot from pain, and I take it at night and it helps some with sleep too. I can't take it during the day though because I work.
I'm also taking effexor, starting off on a low dose and going up, hoping that it helps with pain. I can't take tricyclics because they made me real sick. Also just got a box of lidocaine patches and trying them for 1st time tonight. They take the real bad edge off the pain and I would recommend trying them.
Good luck at your neuro visit! Tell how it went ok?
Thanks for the reply Colleen....I'm currently on Cymbalta, Neurotin(which doesn't work) and baclofen...I really clench too. What does are you on of the baclofen. I'm taking 20 mg. when I sleep but I'm not sleeping, so I think i might ask her to up the dose. I've tried the lidocaine gel and the mouth wash and its great. Thanks again and if I don't hear from you about the dose of Baclofen, I'll let you know about the visit.
Lauren
Hi Lauren,
I just started on Baclofen this week, so it's a very low dose to begin, 10mg. Like every med with me, I have to go up gradually because I'm so intolerant of meds. Even 10mg of vicodin makes me barf. I would like to increase the effexor because the research I've seen on it is showing that it can help a lot for Type 2 like mine at a higher dose like 150mg. Dental mouthguards to stop nighttime clenching cost about $400 and my insurance won't help with it.
Does 20mg of baclofen make it difficult to get up in the morning? Have you tried anything for sleep like ambien?
I haven't tried Cymbalta, does it make you dippy? Can't wait to hear great news about your visit - I'll be rooting for you!
Hi Colleen,
I originally was taking 20 mg. of Baclofen to stop my teeth grinding and jaw clenching. I had my first Neuro appointment yesterday and was very pleased with the doctor. I've never met a more thorough doctor. She explained everything to me and what to expect if medication didn't work. She told me to increase my Baclofen to 40 to 80 mg. a day, starting with 10 mg. in the morning and 10 mg. in the afternoon along with the 20 I already take in the evening and increase if needed. She also added Topamax to the Gabapentin (which I am withdrawing from because the side effects are too bad). I going for a MRI as soon as her office makes the appointment.
I have no problem getting up with that dose of Baclofen and on top of that I take 1200 mg. of Gabapentin and my Cymbalta and can still get up. The Cymbalta I really like. The Neuro said If I didn't think it was working for pain I should ask my GP to stop it but I like it cause I feel really calm and have noticed a difference in how I'm handling my pain and this awful condition. I have tried the Effexor last year and it did absolutely nothing for me, but thats just me. I hope the effexor works for you.
Oh, the Neuro also said I could cut the Baclofen in half (5 mg.) and go up that way, that might be an option for you to see how you handle it. I'm also intolerant of alot of meds, thats why I'm going off the Gabapentin and sticking with the Cymbalta.
Let me know how you get on with the Baclofen and thanks again for your support, I really appreciate it as I don't have much of any in my life.
Lauren
Wow that's great news! It's unbelievably inspiring and hopeful to find a doctor like that, I'm so glad you went! Cymbalta sounds good: it's still an option for me I haven't tried yet and being calm for me is a big part of controlling the pain. Stress is a major trigger so I've started learning how to calm myself down with breathing at work. How much of the effexor were you taking before you tried something else? Topomax is new to me too; thanks so much for the message with all the details, I appreciate it too. Baclofen seems like a good helper so far, and the lidocaine patches I started on are a good thing too. You must be pretty tough, you're handling a lot of meds and I hope things only get better and better for you. Really happy you found a good neuro - excellent news and nice to hear :D
Are your GP and neuro in the same kind of network of docs, meaning, do they work together? How much Cymbalta works for you? Lots of strength to you as you adjust to new stuff...and hope your MRI goes well too.
Hurray!
Hi Colleen, I was on the lowest dose of Effexor, but my girlfriend took it for years and she swore by it. As for the Cymbalta the sweating side effect has become unbearable for me so I've decided to go back to my Cipralex which I really liked for the calming effect also. I called my pharmacy this morning and she gave me the instructions how to withdraw from it. So far the Topamax is okay but it is only day two but I'm gonna be optimistic about it and I'm still cutting out the Gabapentin. Have you tried the extra Baclofen yet at nite? Let me know if you do. I'm glad you like the Lidocain Pataches. Do you buy them over the counter down there. We do up here. The gel is amazing...you can put it on and actually go out of the house with it on then put it on while your out...it's clear.
My GP and the neuro do work together...they are in the same office so that has worked out great. Once again thanks for the kind words of support and let me know how you're doing. Feel better.
Lauren