I need a little advice so here it goes… my neurologist has put me on some new meds because he does not want to increase my carbamazepine at this time(currently on300mg 3xdaily). I told him the new med(gabapentin 100 mg 3xdaily) did nothing for my pain thinking he would stop it but instead he increased the dose to 300 mg 3x daily. I then asked if I could take 20 mg of baclofen at night instead of 15 and continue with the 15 mg the other two times a day as I find it helps take the edge off but he insisted I try 20 mg 2xdaily and 25 mg before bed.
I am freaked about that much medicine. I also take eltroxin for thyroid and Claritin daily for allergies.
This combo seems to be managing my pain well. I should mention I suffer from both TN1 and 2. The thing is I am seriously f’d up on them. It is with great difficulty that I am typing this ( thank goodness for auto correct). I am stumbling around and falling asleep randomly… Like out for the count sleep. I woke up from an impromptu nap today with peanut butter all over my tank top and the couch cushion. Rice crisp cumbs every where. I sort of remember being hungry then tired but there’s blanks.
Should I back off some of the dose and increase even slower. Is this normal for a short period until your body gets used to it. The pain was awful before and I don’t want to feel it again but on the other hand there’s this… Any advice?
How are side effects now?
Ever tried lidocaine patches on face?
Considered an MVD?
Carbamazepine can effect everyone differently. I had a hard time on it until I starting spreading my doses out more from morning to night. Sounds like alot of work but I was then able to manage the side effects. Gabapentin never worked at all. I will say I have a thyroid condition as well and was tired all the time. The carbamazepine was blocking the thyroid meds making things even worse, just a thought.
So sorry you are having med problems. I understand only too well about missing blocks of time. Most of the TN meds caused me to be very sedated, stumbling, falling, etc. and did little to relieve my pain. I think it is pretty much a crap shoot to find the combination of meds that works for you with the least amount of side effects... you just have to keep trying. Wish I had more to offer...but that was my experience. Good luck in finding a combo (quickly) that works for you.
I have been on 2-4 different meds at different times looking for solutions.
My last bout I had been on Gabapentin, Oxycodone, Nortryptiline, and topamax. I dialed back to the nortriptiline and oxycodone on my own because the gabapentin and topamax were doing nothing. They would tritate me up and not take me off. It was messing with my cognitive functioning and so I went off it. I told my neuro what I did and he just uped the Nortryptiline.
When I first started this journey, I was on trileptal, gabapentin and topamax, and oxycodone.
The main issue I have always had is it messes with the way I pronounce words, I forget words, and it messes with my memory. I am almost certain that is the gabapentin. When I go off of it, within 4-6 weeks I am back to normal.
Tegretol made me a walking zombie. I actually had a terrible reaction to it and was taken off rather quickly.
I also had trouble with both gabapentin and pregabalin. They both interfered with my ability to think...remember words, complete sentences, etc. I hated it. When they tried to increase the dose, then it also affected my balance and I had to use a cane. The side effects outweighed the benefits for me....as I felt no decrease in pain level, just side effects. Now
I just take low dose oxycontin every 8 hours and clonazepam 0.5 mg at bedtime. It's not ideal...but it does keep the pain dull enough that I don't want to kill someone or myself.
Lisa (iamrite) said:
I have been on 2-4 different meds at different times looking for solutions.
My last bout I had been on Gabapentin, Oxycodone, Nortryptiline, and topamax. I dialed back to the nortriptiline and oxycodone on my own because the gabapentin and topamax were doing nothing. They would tritate me up and not take me off. It was messing with my cognitive functioning and so I went off it. I told my neuro what I did and he just uped the Nortryptiline.
When I first started this journey, I was on trileptal, gabapentin and topamax, and oxycodone.
The main issue I have always had is it messes with the way I pronounce words, I forget words, and it messes with my memory. I am almost certain that is the gabapentin. When I go off of it, within 4-6 weeks I am back to normal.
Tegretol made me a walking zombie. I actually had a terrible reaction to it and was taken off rather quickly.