Hi - i'm new to this group and to TN -- i have YET to get a call back on a referral to schedule with a neurologist. My MD prescribed gabapentin in the mean time. After reading the info sheet on it, i'm a little afraid to start with such a drug. I'd rather endure the pain. any suggestions?
Thanks!
I never had any problems with Gabapentin, and I was up to 3600 mg/day. This drug has a long track history, and proven safety. Just make sure you don't fast (skip meals). It makes you a little loopy if you do. I have ATN (forehead), and it did help the pain about 40% during the first year of us. The problem is, my body got used to it, and it stopped working. Unfortunately this happens with so many drugs. Was it worth a year of less pain? Yes, but it was a bugger to withdraw from. Good luck.
I took up to 2400 mg of Gabapentin a day with minimal side effects. I found that taking it every 4 to 6 hours helped with effectiveness. If I were you, I would try it.
Thanks! i've had the same advice from a few others, so i plan to start tonight. I've heard i should not miss a meal or fast while taking this, so i will be careful.
I am new to this as well and the first thing the Doctor wanted to give me was Tegertol but I asked for Gabapentin because after researching it I felt it offered the fewest sideeffects. I';ve been on it now for almost a year now it isn't that bad. In the begining it can throw you a little but that passes. Just make sure you don't miss a dose. When I do, I know it because the ugly monster rears it's ugly head to remind me it hasn't gone away. Good luck and no more pain
Hello
I take 2700 mg a day of Gabapentin and I also take 1200 mg of oxcarbazapine. My neuro is weaning me off of the oxcarbazapine but I am still on Gabapentin. The only side effect that I have noticed with me is I get tired a lot faster now and sometimes can fall asleep the moment I sit down in the chair. I will take falling asleep in my chair over the pain that I was having. I will say that reading about everyone else I will say that knock on wood that my tn has not been that bad compared to some. It started in Dec. last year with major pains from my eye up my forehead with a 10 on the scale of pain to now I don't have pain, at since the middle of March I haven't and have been back to work since then. I get what I call pressure on my head but that is it right now, knock on wood again. So in my opinion the gabapentin has worked wonders with me.
sjjmcgee1961
It is helpful to start at a low dose and slowly build up to minimize possible side effects. I had no trouble with it, although after 3 yrs. on it I keep having to increase my dose. When my GP prescribed it for me I found relief pretty quickly.
For me, it is unthinkable to endure the pain, when Gabapentin has given me the quality of life I enjoy so much! . They have to list all the side effects, but you may not have them. The biggest side effect to being medically managed for me is my LIFE back!
Hi - yes, i'm starting slowly at one 100mg cap per day for 3 days, then 2x per day for 3 more days, then 3x/day .... I just don't like being on ANY meds. i took the first dose last night at bedtime and feel a bit slow this morning, but it's still early.
Have any of you considered the surgery where they put a 'teflon' pad between the nerve and the blood vessel? I found a place in CA that specializes in it...
Not sure, but I think all MVD surgeries involve putting Teflon between the nerve and blood vessel…
Not always. It depends on what is found. I had bone pressing the nerve, and it drilled away. No padding was used.
Christine said:
Not sure, but I think all MVD surgeries involve putting Teflon between the nerve and blood vessel.......
Hi Sisugal. I don't blame you for being hesitant about drugs. I'm a light weight when it comes to drugs and I've tried different ones and have had bad side effects. But I found that the Gabapentin in small doses wasn't too bad. My only advice would be to get the pills in the smallest dose of 100mg and that way you can ease into it and manage the doses to suit you better. I find that it does work at least to take the edge off of the pain. My Neurologist prescribed Tegretol first but I was allergic to that, then she prescribed Gabapentin. Everyone is different and I'm glad I went with the 100mg pills because I cannot take large doses even after being on it for 5 years. I hope that helps you because to try to live with the pain might be too difficult especially in the beginning. I had reduced my intake and was doing pretty good but that didn't last too long and I'm increasing it again slowly.
Take care,
Cheryl
thanks Cheryl -- Yes, i have the 100 mg capsules. I have started with only one at bedtime for 4 days now and am supposed to increase it to 3/day gradually. I'm hesitant to do it until after i've seem the neurologist - which is taking forever to get scheduled! i want to be able to describe the symptoms to him when i see him, if that makes sense. i may increase to 2 caps per day this week, but don't plan to go beyond that for now. i think it *may* have taken the edge off already, as i didn't get the immediate burning pain with mouthwash today that i usually get first thing in the morning. Thanks for your advice.
Cheryl said:
Hi Sisugal. I don't blame you for being hesitant about drugs. I'm a light weight when it comes to drugs and I've tried different ones and have had bad side effects. But I found that the Gabapentin in small doses wasn't too bad. My only advice would be to get the pills in the smallest dose of 100mg and that way you can ease into it and manage the doses to suit you better. I find that it does work at least to take the edge off of the pain. My Neurologist prescribed Tegretol first but I was allergic to that, then she prescribed Gabapentin. Everyone is different and I'm glad I went with the 100mg pills because I cannot take large doses even after being on it for 5 years. I hope that helps you because to try to live with the pain might be too difficult especially in the beginning. I had reduced my intake and was doing pretty good but that didn't last too long and I'm increasing it again slowly.
Take care,
Cheryl
I'm glad to hear that the meds did lessen the pain Susugal. I wish my Dr. at the time mine started had prescribed Gabapentin, you're lucky to have a knowledgeable Dr. Tegretol is the usual med prescribed by Neurologist's as far as I know and then Gabapentin, I was told by the Neorologist that Tegretol works the best for TN but I have heard that it has higher side effects. Also if only one pill of 100mg has already helped then you might also be a light weight when it comes to these drugs so you are wise to take it slow. Maybe talk to a pharmacist and research these 2 drugs on line. Don't worry about not remembering your symptoms,they are pretty hard to forget, lol
Take care,
Cheryl
sisugal said:
thanks Cheryl -- Yes, i have the 100 mg capsules. I have started with only one at bedtime for 4 days now and am supposed to increase it to 3/day gradually. I'm hesitant to do it until after i've seem the neurologist - which is taking forever to get scheduled! i want to be able to describe the symptoms to him when i see him, if that makes sense. i may increase to 2 caps per day this week, but don't plan to go beyond that for now. i think it *may* have taken the edge off already, as i didn't get the immediate burning pain with mouthwash today that i usually get first thing in the morning. Thanks for your advice.
Cheryl said:Hi Sisugal. I don't blame you for being hesitant about drugs. I'm a light weight when it comes to drugs and I've tried different ones and have had bad side effects. But I found that the Gabapentin in small doses wasn't too bad. My only advice would be to get the pills in the smallest dose of 100mg and that way you can ease into it and manage the doses to suit you better. I find that it does work at least to take the edge off of the pain. My Neurologist prescribed Tegretol first but I was allergic to that, then she prescribed Gabapentin. Everyone is different and I'm glad I went with the 100mg pills because I cannot take large doses even after being on it for 5 years. I hope that helps you because to try to live with the pain might be too difficult especially in the beginning. I had reduced my intake and was doing pretty good but that didn't last too long and I'm increasing it again slowly.
Take care,
Cheryl
When I started, 100 mg 2x day worked for me for the first year. Then I had to up to total 400 mg/day. That worked for another year. If only 200 mg helps, be glad.
sisugal said:
thanks Cheryl -- Yes, i have the 100 mg capsules. I have started with only one at bedtime for 4 days now and am supposed to increase it to 3/day gradually. I'm hesitant to do it until after i've seem the neurologist - which is taking forever to get scheduled! i want to be able to describe the symptoms to him when i see him, if that makes sense. i may increase to 2 caps per day this week, but don't plan to go beyond that for now. i think it *may* have taken the edge off already, as i didn't get the immediate burning pain with mouthwash today that i usually get first thing in the morning. Thanks for your advice.
Cheryl said:Hi Sisugal. I don't blame you for being hesitant about drugs. I'm a light weight when it comes to drugs and I've tried different ones and have had bad side effects. But I found that the Gabapentin in small doses wasn't too bad. My only advice would be to get the pills in the smallest dose of 100mg and that way you can ease into it and manage the doses to suit you better. I find that it does work at least to take the edge off of the pain. My Neurologist prescribed Tegretol first but I was allergic to that, then she prescribed Gabapentin. Everyone is different and I'm glad I went with the 100mg pills because I cannot take large doses even after being on it for 5 years. I hope that helps you because to try to live with the pain might be too difficult especially in the beginning. I had reduced my intake and was doing pretty good but that didn't last too long and I'm increasing it again slowly.
Take care,
Cheryl
Sisugal. I too have just recently started Gabapentin. I am using 600 mg per day along with 800 mg of Carbamazepine. So far no side effects Sometimes if you want relief you have to weigh the odds. I do not like the pain of TN. Mine is increasing even after Gammaknife. If your doctor has prescribed it I would say try it for a couple of weeks and see how you will feel. Yes taking drugs long term will have health and side effects and only you can make that decision. You could even talk to your pharmacist about the side effects and they too can provide sound advice for you
I hope if Gabapentin is not for you perhaps your doctor or pharmacist would be able to offer a different medication
All the best to finding what works for you so you may find peace within
Chippy
I at first asked for the lowest dose , that was with 10mg of baclofen and it helped . I'm glad I started that way so my body got accustomed to it . The baclofen really helps me at night . Now i'm taking a lot more because the TN has gotten worse
and now i'm ready to ask the neurologist for MVD surgery.
From what I've read here with others we are all on different meds and they all work differently.
This works for me, I took other meds and they changed my character . Try what your neurologist suggest and if your not comfortable with the meds contact him.
God Bless
It is my understanding that gabapentin is the most benign of all the drugs prescribed for TN/ATN. Personally, I would rather have the side effects of the medications than suffer the pain of the attacks of TN and the chronic, unrelenting pain of ATN. I was only diagnosed 2 months ago and am still finding my way through this, so my suggestion would be to take the gabapentin. I do believe the side effects of it are minimal in comparison. Now I am on 600 mg of gabapentin 3x a day and carbamazepine 200 mg twice a day. I will take feeling loopy over the pain any day. Don't be afraid of the gabapentin. I hope you get in to see the neurologist soon.
Hi and welcome to the group. I took Tegretol when I was first diagnosed, but I feel much better mentally with gabapentin. Not so slow and cloudy. I started with 600 mg. per day, 2 pills 3x per day. I have a prescription for 900 mg. per day, a small amount considering what others take. It works for me.
Having type two, I live with a constant low grade pain, strange mineral taste, and occasional hard pain. I find my quality of life is better on gabapentin, taking a bit less meds, and tolerating what I can to be as alert as possible.
I take 600mg of gabapentin 3 times a day, this has been gradually increased over time. I many of the side effects, however at least they take away a percentage of the pain, I have to map my daily activity to fit in sleeps, I still work full-time (I have to), not have found that by doing this at least I have some control on my life. Give them a go and take it easy.