Has anyone been on gabapentin and how did it work for you, been on it for about 3 months now and i am ok for a week or 2 then the shocks return and i have to up the dosage. At present I am on 300mg in the morning, 200mg in the afternoon and 300mg at night. The pain is coming through again, had a bad episode today but I really don t want to up the dosage,,,can anyone help please.
Same problem here Karen. My left me on gabpintin and added Dilantin . Good luck ,god bless
Hi Karen,
I take gabapentin and baclofen and sometimes pain killers for breakthrough pain. Check with Dr. and maybe he/she can add something else to help. good luck
Scott
Thanks Scott got a doctors appointment on Friday,but I am abit scared to take anything else as I feel quite sick on the gabapentin,, was on amytriptilin before,,
Scott said:
Hi Karen,
I take gabapentin and baclofen and sometimes pain killers for breakthrough pain. Check with Dr. and maybe he/she can add something else to help. good luck
Scott
I'm sorry you're having trouble. I've only been on gabapentin for 2 wks now, 300mg's 3x's aday. For the most part it works but I do have break through pain as I get closer to the next dose. I'm ready to call the doc and ask for something to help with that but I'm trying to soldier through it. Like you, I don't really want to be on anything else. The gabapentin alone has me out of wack as it is. Good luck...
I have been on gabapentin for about 1 month now. I went from 300mg at night to 300 at night and 300 in the morning in the first week. It helped with the pain, but my brain was so foggy for about 10 days. It was hard to work for the first 2 weeks. Then the pain started creeping in again. I took 600 at night and 300 during the day (so I could think at work). I'm not sure if it is helping very much.
If I don't take it with food I feel terrible for the next 3 hours-stomach, vertigo, dizziness, random pains. I'm not sure about staying at 900 total. Seems like there should be a better way to go-I might need to add something different. (I had high hopes that if this medication would work, I could eventually be pain-free and start to taper off of it. I get the feeling that it won't happen like that. But at least no tremendously horrible episodes this month while on the gabapentin.)
I have hydrocodone for breakthrough pain. I don't think it really works very well.
Karen-do you have anything for breakthrough pain? I know I am scared of being on meds for the rest of my life, but I fee like it is better than suffering in the pain we all experience. I feel like I need it to get through my life and be there for my family.
I hope you feel better soon.
I feel that when i add another 100mg to my daily dosage I am ok for a week or so then the pain comes back so its like i will constantly have to keep upping,,, you'd think there would be something that could take that would just put a stop to it altogether xxx am i hoping for too much xxx I only take diclofenac but i feel whats the point of taking something after the pain,,,,its because i don't tolerate painkillers very well....I usually end up feeling very sick. Like you I want to be quite alert at work but sometimes I feel utter dread incase I have an episode at work which has happened on quite a few occassions xx
Momof3 said:
I have been on gabapentin for about 1 month now. I went from 300mg at night to 300 at night and 300 in the morning in the first week. It helped with the pain, but my brain was so foggy for about 10 days. It was hard to work for the first 2 weeks. Then the pain started creeping in again. I took 600 at night and 300 during the day (so I could think at work). I'm not sure if it is helping very much.
If I don't take it with food I feel terrible for the next 3 hours-stomach, vertigo, dizziness, random pains. I'm not sure about staying at 900 total. Seems like there should be a better way to go-I might need to add something different. (I had high hopes that if this medication would work, I could eventually be pain-free and start to taper off of it. I get the feeling that it won't happen like that. But at least no tremendously horrible episodes this month while on the gabapentin.)
I have hydrocodone for breakthrough pain. I don't think it really works very well.
Karen-do you have anything for breakthrough pain? I know I am scared of being on meds for the rest of my life, but I fee like it is better than suffering in the pain we all experience. I feel like I need it to get through my life and be there for my family.
I hope you feel better soon.
Thanks,,,, when I was on 200 in the morning, 200 in the afternoon and 300 at night I was fine but then I had to add another 100 in the morning as I was getting really bad pain and ive felt crap since, i even tried alternative days 300 one morning and 200 the next but I was still getting pain so had to keep it at 300 but I feel I can t go up again as i have to work xx
houston man said:
I'm sorry you're having trouble. I've only been on gabapentin for 2 wks now, 300mg's 3x's aday. For the most part it works but I do have break through pain as I get closer to the next dose. I'm ready to call the doc and ask for something to help with that but I'm trying to soldier through it. Like you, I don't really want to be on anything else. The gabapentin alone has me out of wack as it is. Good luck...
Well I can tell you—that I take four different medications to control my pain. But I am pain free and it is sooooo worth it!!! Good luck. I hope you feel better soon! Min
What do you take? When i was on amytriptilin I took 25mg at night and 10mg in the morning but I couldn't get up in the morning and was forever sleeping in and my son being late for school,, thought I felt ok on them until I came off them and then I realised I had been muddling through,,, they didn't help very much with the pain either.
Min said:
Well I can tell you---that I take four different medications to control my pain. But I am pain free and it is sooooo worth it!!! Good luck. I hope you feel better soon! Min
Of course the Dr is your first source for help, but I can tell you Gabapentin has been a life saver for me. It is the only drug I have ever taken for TN, had it 7 years now, Yes I have had to up the dosage, but it works, when I have good days I taper off a bit, but you can't just ever stop it as I understand. I don't have the foggy head from it, when I up it I get tired, but I can still function, when break through pain comes, that is another story, but since starting it those days are fewer than functional ones, but we are all different. It is such a darn helpless feeling on those bad days, so maybe another drug you can tolerate or a topical or a mix, don't want any of us in pain! Take care and let us know. Sending you a very gentle hug.
Betsy
Thank you,,,, half the time I don't know whats worse the pain or the fear of it,,,, when I get the pain I go into a panic and then I panic even more waiting on the next one xx
Betsy Carlson said:
Of course the Dr is your first source for help, but I can tell you Gabapentin has been a life saver for me. It is the only drug I have ever taken for TN, had it 7 years now, Yes I have had to up the dosage, but it works, when I have good days I taper off a bit, but you can't just ever stop it as I understand. I don't have the foggy head from it, when I up it I get tired, but I can still function, when break through pain comes, that is another story, but since starting it those days are fewer than functional ones, but we are all different. It is such a darn helpless feeling on those bad days, so maybe another drug you can tolerate or a topical or a mix, don't want any of us in pain! Take care and let us know. Sending you a very gentle hug.
Betsy
Work is always the problem isn't it. I am a police officer so it's very important that I am aware of everything. I try so hard to work right now, but I've found it so dificult. I've burned a lot of time in the last couple of weeks, and I plan on taking much of Sept off so I can just lay back and try to adjust to all of this. I love what I do for a living and it kills me to think that I might have to give that up. I hate this thing, but like several people have said, "It is what it is."
I'm really giving thought to MVD or the Gamma Knife. I just want to be able to function and do the things I have done for so many years now. I can retire in 1 1/2 years if I want, so at the very lest, I have to make it that far. I'm sorry if I sound like I'm throwing a pity party. I'm not really like that. My dad raised my brothers and I to be tough, and even my sister who I believe is the toughest of us all. She has lived with MS now for 20+ years and has never let it define her or get her down. So with that thought, we are going to be fine, all of us. We can do this, I can do this. :)
Karen Thomson said:
Thanks,,,, when I was on 200 in the morning, 200 in the afternoon and 300 at night I was fine but then I had to add another 100 in the morning as I was getting really bad pain and ive felt crap since, i even tried alternative days 300 one morning and 200 the next but I was still getting pain so had to keep it at 300 but I feel I can t go up again as i have to work xx
houston man said:I'm sorry you're having trouble. I've only been on gabapentin for 2 wks now, 300mg's 3x's aday. For the most part it works but I do have break through pain as I get closer to the next dose. I'm ready to call the doc and ask for something to help with that but I'm trying to soldier through it. Like you, I don't really want to be on anything else. The gabapentin alone has me out of wack as it is. Good luck...
Karen and houston man- I feel like we are going through the same things. Maybe being new to the gabapentin and or TN and trying to work is a tough balancing act. I personally feel like when I was diagnosed and started treatment a mere month ago, I was in such terrible pain that the relief from that was just amazing. I wanted to overlook the side effects. But I also secretly wanted the pain to be gone forever. When it crept back, having to increase the meds made a big hole in my plans. And each time I increase the meds, I wonder how much more to get it to stabilize and not have the side effects. From reading on this forum, people take hugely higher doses than we are concerned about. My fear is that if in one month I am taking what I consider to be a lot what happens years from now-triple doses, switching from many meds, taking three or four meds,living with excruciating pain?
I know we can all survive. I guess I just need to get over my preconceived ideas of how much medication to take and understand it is what it is. I know we can make it.
I can’t say thank you enough for the support I have found on this forum.
Karen is it just gabapentine u r on? I have a cocktail of pregablin and duloxetine… ask yr doctor about combinations of drugs xxx
Thanks I ve got an appoinment on friday morning xx yes its just gabapentin xx
Helen said:
Karen is it just gabapentine u r on? I have a cocktail of pregablin and duloxetine... ask yr doctor about combinations of drugs xxx
Karen, I've been on Gabapentin for 16 months, and it was largely fantastic, minimal breakthrough pain...However recently it started failing on me, starting me on the 'well what do I take now?' road...I've had TN for almost 2 years and have tried a few things. At highest dose I was on 3200mg daily, broken into 8 doses of 400mg as I don't tolerate any more than that in one go very well. The side effects either settled or I learnt to live with them, preferring that over the pain. As it's failing, I'm starting to be weaned off it while trying new things...It's not fun.
Best of luck to you hun, for some of us it's a marvelous drug, for others not so much. Hopefully you will be a lucky one :)
Thank you and best of luck to you too xx