Who is on Gabapentin or Neurontin and how has it affected you?
I’m on 900 3 times a time and its not touching my TN. I just called the Dr and told them I was having bad shocks … Good luck !!! I hate meds!!! Thinking about having the MVD …
Gabapentin was initially effective for me with minimal side effects. I found myself a little more nervous and high strung in the mornings. Shaky hands. I could have lived with these, but it was only effective for about two months. I am now on a combination of Gabapentin and Oxycarbzepine. Effective for the pain, but serious memory issues and extreme loss of focus.
Was on 1200mg a day 400x 3 times a day I did Ok the side effect when I first went on it was a little dizzy and spacy But that only lasted about 2 weeks then it was not a problem that worked for about a year then i had a flare up and I am on 2800 Mg a day 700mg 4 times a day it makes me really tired foggy spacy lack of focus and some vision problems I find when I am more active the side effect do not seem to bother me as much the meds are working I only have some moderate pain not too bad I do not want to increase any more I might try new meds Just went to a chiropractor and it seemed to help I think I am going to go back and see if I can with his treatments lower my dose of gabapentin I will let you all know how it goes Good luck it is no fun being a space ranger I am so sick of neurologist they are only good for diagnosising you but treating you is another story I am thinking about going to a pain managment doctor
I also am thinking a of a MVD but I have some personal issue I need to take care of before I do that got to get my house in order first
Since i started gabepentin, i am in constant pain. I was at least getting relief from just the carbamezapine. Its like the gaba turned on the electric! I hate it…anyone have any ideas???
I was on 300 mg x 4 times of Gaba a day plus 400 mg of Carbamazepine CR which is slow release which I took just before bed. Both Gaba and Carbamazepine takes at least 4 to 6 weeks before it really starts to kick in and the side effects slowly subside.
The other thing Carbamazepine last up to 10 to 12 hours in your body so I took it at night and slept threw the side effects. Gaba I had to take every 4 hours, if I was 20 minutes late I would start to hurt. So I had to set alarm clocks and the cell phone to stay on time with it(as well as no short term memory from Carbam). This combo keep the pain away once I started using the alarms but I couldn't work while on that high of dose.
Just recovering from MVD on July 22, so now I tapering off everything. Wishing you a pain free day as possible.
I was on 2100 mg of Gabapentin by the time I had my MVD surgery last September. I took it along with baclofen. I couldn't tolerate Tegretol, so I didn't have much of a choice. I didn't have too many side effects... then again I had so much pain still (which is why I had MVD), that it distracted me from a lot of the side effects.
After my surgery I stayed on 900 in the evening, but only because I have Fibromyalgia and I'd been on 900 at night for a few years prior. Now several months later I find myself back on higher doses, because I've developed TN on the other side of my face. This time I notice myself having a lot more problems focusing. Like I feel really foggy. I'm hoping that I adjust to it a bit better. I think it works much better when combined with baclofen though. I see my Nuero Monday and I'm hoping that we'll come up with a combo that will help keep it under control. I was up for 5 hours last night, unable to sleep from the sharp pains, so keeping my fingers crossed. Anyway, in answer to your question, I do think it can help, but it can take a bit to get used to the foggy feeling if you have a job that requires concentration.
I was just diagnosed about 3 weeks ago (luckily I was diagnosed quickly after symptoms started). I was started on the gabapentin. I started at 300mg at night, then a few days later twice a day. I was definitely foggy for about 7-10 days. Sometimes I was dizzy. It helped a lot with the pain. I am seeing the fog lift this week and I can concentrate at work a lot better. Dorctor said I may have to go to 900 total a day. I don’t know it will be broken up, but I don’t know if I can work if the fogginess continues with the higher dose. Hope it is helping you.
I was prescribed it two separate times by two separate doctors. Each time, all it did was further confuse an already confused brain (pain will do that). I also found, the first time at least, that it gave me a cool (useless and scary) power: I could mentally "move" my pain around and throughout my head and body. My pain got, as the Chambers Bros. would say, "psychadelicized." Spacy, man. I got up to 3000mg/day and then begged off. Perhaps this was a withdrawal symptom from the Xanax I was supposedly cleansed of after a five-day rehab stint, so I am not saying this will happen to you. My pain is not yours; my meds are likely not yours. I'd try it and see. But don't expect a wonder drug and you will never be disappointed. Xanax and Elavil were one of the many early drug protocols for fibromyalgia, and they still do the best job for me. I have a tunnel thru the facial pain to the outside world for a few hours a day and for the worst part of the day, evening, it takes a bit of the edge off. I'm sure Gabapentin is good for somebody, just not for me.
I take Gabapentin me, it works very well for my TN. I take 2700 mg. But after reading the other answers I see the usual mix of reactions and side effects many report. As there are over a dozen meds to take for TN, it's often a case of try see. The first few days can be weird, I "fairground" as in my head swirls if I make sudden head movements. But I generally sleep well.
I'm currently on 3200mg (chained to a regime of 400mg 8 times a day >.< ) and my GP say it's the maximum dose I can take. I was on 2800mg daily for 4-5 months as my base dose, but in the last few days (probably due to stress) it's breaking through enough to up the dose to try and get ahead of it and stop it. My 'normal' is twinges - I'm used to that.
As far as side effects go, it's a long list and many of them cross over into side effects suffered from a bad MVD attempt so I'll just put the ones I notice the most from the Gabapentin;
Weight gain. Big time. In the last 16 months that I've been on it, I've gained 26kg (around 57lbs, I think) It's not fun.
Nausea/reflux depending on dose - My daily dose is so divided because more than the 400mg in one go makes me sick.
Concentration issues/inability to focus on things like reading for extended periods.
Anxiety/nervousness/mood swings.
Increase in RLS.
Increased bruising. (half the time I don't even have a clue how I got one)
Heart palpitations (thankfully not often but it's scary when it happens)
Thirsty as heck/dry mouth/metallic sort of taste in my mouth.
Joint pain. (my knees especially)
Those are probably the worst ones....There are plenty of others.
hi all, writing this to the group at large on behalf of my ailing mother: has anybody tried gabapentin in crème form, that you spread over afflicted areas? she has had two gamma knife procedures, the second was two or three weeks ago with returning episodes. Thanks in advance, great support tool this is!
I have been on Gabapentin for a while. I take 400mg 3xper day along with Tegratal. and I have had the confusion and weight gain. The most disturbing to me is trying to talk to someone and having to really "reach" for words. Easy words too. Like I was telling a story about my daughter at gymnastics which she has done for a long time and couldn't get the word "beam" out. I could see the object in my head but I could not remember what it was called. This happens to me several times a day.
Gabapentin has been great for my pain control but not great for my life. I used to be on 4000 mg per day to control my pain and it was the best I have felt in 4 years but the side effects are more easily noticed by others than yourself I think (as is the situation with most anti seizure meds I have tried). I have gotten down to about 1200 mg per day and I notice much more and remember more than I have in such a long time. I Definetly am dealing more with the pain but I struggle increasing the med again until I have to so that I am not such a space cadet - it’s hard to figure out how much pain we should endure versus how much medicine to take in order to get rid of it completely. I am honestly happy I know gabapentin will control the pain but its hard to know how much I should take before it really impacts others in my life.
Gabapentin gave me extreme brain fog and short term memory problems. I still take 300 mg at night. I also take oxcarbazapine and lyrica.
I take a combination of Gabapentin 2400mg, Carbamazepine 1200mg, and Baclofen 30mg ...per day.
I have the twitchy hands in the mornings and anytime i type. I also have the brain fog all the time..it's that feeling you get when you drink a couple shots of alcohol; not drunk but just a little foggy. I also am sleepy all the time. And the best..i have that annoying thing where i drop/forget words in the middle of talking. (especially words with C's in them for some reason...lol) Also, as mentioned above...short term memory is a problem. I have to write everything down now.
However...gabapentin was a blessing when it was added to my carbamazepine. After taking it for a week or so, my pain got much, much better. So, side effects were/are worth it to me. There are many days that i am pain free now. I still have cycles of break through pain on occassion, but day to day pain is much improved with the addition of gabapentin.
I hope that gabapentin provides maximum relief with minimal side effects for you....
Wishing you peace
~Mistee
Hey, I am on gabapentin and have only been on it for about 1 month. Has calmed the jolts but facial pain is always there. I hope it works for you. If anyone knows of a better med, I would be interested. :) pumpkin
thanks for the response everyone....well, what about Lyrica? I think I am going to try that with my mom, see if that helps....this second GK procedure made things a hell of a lot worse....don't they know that>??
Me too, that is why I went off it for the first time, but the pain was so severe, that I decided I'd rather be dumb that mean. I tell people that I can handle the 10pt IQ dip to be pain free.
MichelleM said:
The most disturbing to me is trying to talk to someone and having to really "reach" for words. Easy words too.
Interesting idea.
Lupa said:
I'm currently on 3200mg (chained to a regime of 400mg 8 times a day >.< ) and my GP say it's the maximum dose I can take. I