Anyone here tried using both Gabapentin and Carbamazepine for relief ?
chippy
Nope. Currently taking Carbamazepine and Baclofen. How is that combo working for you?
Patty said:
Nope. Currently taking Carbamazepine and Baclofen. How is that combo working for you?
Chippy said:
Patty said:Nope. Currently taking Carbamazepine and Baclofen. How is that combo working for you?
Patty. Just started a few days ago. I can only say that I have had a few moments which are pain free however. Only a few more weeks will tell as I am to increase the Gabapentin
Chippy
Hi, I’ve been on both for over a year. I thought the Gabapentin had calmed things, but I’m starting to wonder if I’ve actually had several short remissions…my symptoms and attacks are just as severe as they were a year ago…will soon be trying a new cocktail to see if it helps.
I did with no relief and the fatigue was awful. Went back off the gabapentin and just taking the carb now. What has worked for me is a decrease in caffeine and sugar while increasing the fruits. I dont know if it is that or just the fact that I drink two of my meals per day now that has helped make my days bearable. Hang in there.
Take heart Chippy, the meds will kick in around one week. You should notice a difference.
Chippy said:
Patty. Just started a few days ago. I can only say that I have had a few moments which are pain free however. Only a few more weeks will tell as I am to increase the Gabapentin
Chippy
I started with Carbamazepine back in April 2014..I had an allergic reaction about a month later and started with 300 mg of Gabapentin. I am now up to 1200 mg a day and having pain breakouts. It seemed that Carbamazepine worked more effectively, but I may just be getting progressively worse. My TN is right side UPPER face from the top of my cheek up. Have periodic pain, burning and watering in my left eye, but no pain or spasms. All the the pain and spasms occur in my right eye or right side.
Hi Chippy
I was on both gabapentin and carbamazepine at the same time. I was only on the carbamazepine for about 6 months maybe. I started it before I had an appointment with a neurosurgeon and then weaned off of it a few months after my MVD. I was on 3200mg gabapentin and 600mg carbamazepine a day. When I added the carbamazepine I had tingly lips and was a little loopy for a while. Eventually I just turned into my sluggish and sleepy self with the meds. It held off the pain for the surgery.
~Merrrra
I take 1800 gabapentin and the neuro is going to add carbamazepine since the gabapentin alone is not stoping the break through pain. We'll see. Let me know how you do.
Pris: I was up to 1200 Carbamazepine and had an incident possibly unrelated but not sure due to my reaction from having strawberries (scoots) that we switched meds to Lyrica. Got up to approx 8 To 10 capsules per day. I was “off the grid” as I was regulating myself as to how many I took per day. If I had a few good days I would decrease amount of Lyrica but I would never exceed 10 per day. I was using Lyrica until I had Gamma knife then I started to decrease and went down to where I only took 2 per day. I possibly could have gone off Lyrica totally but I wanted to keep some meds in my system as a precautionary measure. After this winter I developed a skin rash and requested I return to Carbamazepine. I am up to 600 mg a day and 200 mg Gabapentin. I have a very high pain tolerance and try not to use a lot but I have been hit so hard this time with both classic and atypical that I do not know which way is up. I liked Lyrica better for various reasons, one being not as drowsy and if I wanted to have an alcoholic drink I didn’t get a sick feeling
Chippy
Were you happy with the gamma knife? Did it decrease the pain level? I dont know if thats in my future or not.
ORNURSE said:
I did with no relief and the fatigue was awful. Went back off the gabapentin and just taking the carb now. What has worked for me is a decrease in caffeine and sugar while increasing the fruits. I dont know if it is that or just the fact that I drink two of my meals per day now that has helped make my days bearable. Hang in there.
That's whats so frustrating about the disease. You dont know if its short remissions or the drugs!!
Kimmington said:
Hi, I've been on both for over a year. I thought the Gabapentin had calmed things, but I'm starting to wonder if I've actually had several short remissions...my symptoms and attacks are just as severe as they were a year ago...will soon be trying a new cocktail to see if it helps.
Pris: Yes I was happy. It is similar to them nuking a brain tumor. It is very precise and you are home same day . As procedure done out of town we stayed in a hotel in the city as precautionary measure When I left hospital there were only 2 bandages on forehead and two small holes in the back of my head which all healed nicely. I held off almost five years before I had the nerve. MVD is talked about the most but if MRI is not clear I did not want anyone fiddling with my brain just poking around
I had gone from high med levels to almost nil within six months and had been pain free for almost two years. I got caught in the extreme cold of this winter and the pain at present is worse. I am hoping these two meds will get me back to a more normal and hopefully less painful state. If possible I would do Gamma again as it is less invasive
Chippy
Yes, I take this combination. It kept the pain under control for the most part for a couple years. I'm increasing the doseage of carbamezepine because the pain is back. Last episode was three months ago. I had pain yesterday that was on a whole new level. I hate the meds and side effects, but I will do anything to keep the monster at bay.
Hope you have success with this cocktail and that the side effects are tolerable. If not, welcome to zombie land. I can only recommend that you find a way to stay organized and focused (pretend you have ADD), and develop a sense of humor about short-term memory loss and the inability to recall words. Also, if you do not have insurance and pay out-of-pocket for the carba, please let me know if you are experiencing a dramatic increase in cost. (see my post on this) Good luck!!!
Juliet: as I had been on high doses of Carb I am not worried about forgetting. As I have and do forget. While I had worked with people for years their names I either could not remember or I called them by another name. What I find most frustrating is when I am in a conversation and I totally lose my whole train of thought. Now, where we’re we? Ha-Ha.
I just upped my Gabapentin today but kept Carb at a low level. A few weeks will tell if this strategy will work
Thanks for your input it is appreciated
Chippy
Chippy,
I can so relate! Especially the forgetting names ... of people I've known for years! It is so stressful when it happens at work. I write everything down in meetings and feel like an idiot for referring to them for the slightest thing. And, the poor word recall... ugh! I have always been a good communicator. Now my vocabulary is reduced to "um" while I stall for a word that will at least make sense. Most of the time, someone completes my sentences. And last night, I was playing Uno with my fiance and his kids and had such a hard time keeping track of whose turn it was, unless I totally focused on the game and didn't participate in the conversation or bantering. And then the pain started because I didn't take my meds in time. So, I couldn't speak at all for 30 minutes until they kicked in. I feel like only a fraction of myself is working.
Ah, felt nice to vent. I try not to complain too much because I can see the signs of caregiver burnout. I'm sure this is hell for them too. As soon as we have insurance, I think I'm going to finally do the gamma knife or MVD and at least have a chance at a normal life.
Quick question... do you notice worse side effects from Gabapentin or Carbamezepine?
Juliet. I have not noticed any signs this time around with the Carbamazapine as ism on a lot lower dosage pre-Gamma. Prior I was up to approx 1600 mg per day. I was okay end by my neurologist at that time to go as high as 1800 mg. I was sort of out of it and incoherent most times and memory loss seems to be a good side effect as per others on high doses. I also could not drink although I would have a glass of wine but only at home in case I became really out of it. So far no side effects with the Gabapentin and Carb combo. However just increased Gabapentin to a slightly increased dosage and only time will tell
It is so nice to have people who are able to share what they take as per amounts and side effects and just how we feel on a daily basis.
Here is to another day. Tomorrow perhaps we will all have a bit of relief and can enjoy
Chippy