I know what you mean in everything you said! I too try not to give anyone advice because each situation is SO different. I always think ... wow, I'm the last person in the world who anyone should listen to. Ha Ha My niece used to ask me for advice about the guys she would be dating ... I told her I have no right to give her advice ... ha ha again. As I've mentioned before ... I can't keep track of what I'm writing and what response
I'm getting because I put so much into one message. I'm just hoping someone will read my messages somewhere down the line ... the way I've read some of the messages here on this website ... and get some little piece of information from it ... the most important thing for me has been that someone answered me! Don't always get a response at all on some of the websites. One good thing to report: I increased my dosage again to 400 mg a day ... not a high dosage ... but again I got a little bit of a result ... every time I have raised the dosage ... first 100/day and then 200/day and then 300/day and now 400/day I got a little tiny tiny bit of relief! But, going back to what we were talking about when it comes to giving anyone advice, that probably wouldn't be the case for anyone but me ... it is so ... well, complex ... hum, complex regional pain syndrome ... thank you again, I'm going to take everything that I've read on this website into consideration and back off for awhile ... don't want to over burden everyone with my minute to minute updates ... and I'm going to take whatever information I get from the doctors and try to learn from all of it ... all is good ... better than it has been for a long time in relation to my mouth pain and chewing ... my health otherwise is great ... so I consider myself very lucky there. Janice

Janice it took me so long to work up to a high dose of neurontin. My pain doctor had me do it real slow to lesson side effects and I still had some like an out of it and pressure in my head etc but they wore off quick. Everyone is different though but some even need 3500 of neurontin I was told.
As for not wanting to give advice etc I think that for myself I just try to remind myself and tell others that yes we are all in horrible pain but respond different. What works for one may not work for another. What causes a flare up in one may not in another. Etc.
Stay strong

Thanks again! I took my first 300 mg dose of neurontin last night and it helped the pain VERY MUCH ... but my lower lip is swollen on the left hand side so my sister suggested I call the doctor but he hasn't called me back ... hope I don't have to go off of the nuerontin because it helped me SO much ... maybe the swelling is from something else ... but it is suspicious. Sigh. Talk to you again soon! I'll probably take a work assignment again soon so won't be on the computer as much.

Glad you called your doctor. If your swelling in your face continues to keep going you will need to go to the hosptial. Angio Edema can happen with certain drugs. Your face would swell, sometimes you tounge too. this would be dangerous so keep on top of it. Wait to hear from your doctor, but if it gets worse go on it OK? I have had this happen. so I am a bit worried. ginnie

my new neuro doc tried to tell me that is what I have after my Neuro of over 8 years passed away. I was told that I have T.N. by him but now my new Neuro says he thinks it is RSD . My PNS ...aka spine cord stim saved my life . after being on the med merry -go - round for 3 years and nothing helping. I have had my stimulator for ... this July will be 10 years. I do not think it is RSD it dose not get red or feel hot it has not spread so I am just sticking with my original Neuro doc and say its is T.N .
here is my thread in the T.N. forum about PNS for face pain.... long read of others having the surgery but may be helpful ...
http://neurotalk.psychcentral.com/thread124048.html
PEACE
BMW

Hello ... my neurosurgeon and my neurologist told it isn't T.N . Also, my pain isn't in the face it is inside of the mouth ... the whole lower gums ... had to have my teeth pulled because of the pain in that area ... and have dentures ... so who knows ...

Ginnie, I didn't hear from the doctor office so I am not taking anymore of the meds until I hear from his office. This doesn't sound good to me. Didn't happen with the 100mg 3xday but happened after I took that 300mg dose Tuesday night.

Pain is about 80% better but what good is it if this causes me serious health problems in the end.



Later.

I hope your doctor called back and if not I would keep calling or ask to speak to the nurse. I hope you can stay on the med too. Like I said some side effects that one can handle to go away when one adjust. Obviously some are too bad to stick with so it depends.
Hope you feel better and what ever work you do goes good.

Hello ... the nurse called me back this AM and said to stop taking anymore of the neurontin until she talks to the neurologist but I haven't heard from them but I am sure they will call me back tomorrow AM ... he is a professor too and she has a hard time getting in touch with him ... if it was really really serious she would have called back promptly ... I just happened to have an appointment with my general practitioner this afternoon to go over some blood work and she feels that this would have happened weeks ago when I first went onto the neurontin 100mg/3xdaily but of course feels that the neurologist will know better as to what I should do. Haven't taken anymore of the neurontin ... nurse said he may call something else in for me but I'm keeping my fingers crossed that I can continue on it ... in some capacity ... I don't know ... I have a feeling that it is related to the increased dose Tuesday PM to 300 mg because while my pain decreased 80% over night ... the lip also swelled up over night ... go figure ... later.

I'm so sorry. With the pain decrease did you maybe do anything else that may have caused the flare? I know that it's fairly normal when we FINALLY find something that relieves the pain that we figure we can just go back to normal and then immediately have a flare (which can be swelling) because we did too much. I know you said you have difficulty eating...did you maybe try to eat something that you wouldn't have been able to if the pain weren't reduced? Just trying to offer hope that maybe it wasn't the neurontin.

There are other options though like Lyrica, Cymbalta, etc that might be helpful that the doctor could start you on. Everyone has different reactions to different meds so if neurontin isn't the one for you then maybe another one will be. Stay positive...hope they get back to you soon.

So glad you are in contact with the doctors. The alergic reaction or lip swelling isn't a good thing so It is good you are waiting to hear from the doctors office. Since my two bouts of this kind of swelling, it make me awhere of the condition. good wishes to you and I hope it works out. ginnie