hi hun

well her is my past experice with this med. i was up to 3200mg a day this was almost 7 yrs ago .. i have had very bad things happen due to this meds. hair changes ,teeth, memory problems. it would basicly do nothing for the pain but i was in a awake coma stage basicly. almost burnt the house down with my oldest who at the time was almost 2 home with me i went off it immidealty after this as it wasnt doing anything for my rsd. i had been on it since 98-02.. i havent had much lucky with these type meds. in controlling RSD pain or even to manage it. i dont take them even now .. so im not really any help here i am sorry just wanted you to know my history with it

hope this helps with something LOL

carrie

I am currently on 1200 mg of it. I have been as high as 1800 mg (keep in mind I only weigh 95 lbs and we also use the Neurontin for my seizures), and while 1800 mg worked better, the cognitive effects were just too much for me and for my drs. Neurontin helps the burning and tingling sensations, but does nothing for the surface pain and internal deep achiness and itching. I also am on a regime of Botox for the CRPS in my abdomen and my new dr just started me on Lidoderm patches. I can use my TENS unit on my legs, but its hit and miss and now that my legs are finally correctly diagnosed as CRPS we are trying to get a handle on it before the summer weather hits (heat is aggravates my legs).

L2L

Jeff takes 2000mg of Neurontin daily. He was origionally on Lyrica and it worked ok for him but the cost was too much. The Neurontin seems to work just as well for him. When he started both of these meds I noticed some affect to his cognition (alertness, comprehension, ability to get his point across) but it improved after a week or two. The Lyrica seemed worse for him but he was also on Oxycodone at the time.

Hi.

I'm also on Neurontin 2700mg a day. I have tried going off the neurontin - but that is when I realized just how much it helped me. Lyrica and Cymbalta caused side effects (myoclonic seizures and eyes permanently dialated) so that I couldn't be on them.

Since trying those medications, I've had a SCS implanted. It's only been a few months (nov 08). I'm still on the neurontin. I'm sortof scared to go off of it because of the spread to my face. But, I'm also on baclofen for muscles cramps, celexa for depression, oxycodone for break through pain and pain patches as I need them.

The implant really does help, but it doesn't take everything away. I can't turn up the stimulator very high because it's in the base of my neck. So, any movement in my neck will cause a singe if I turn it up too high. So, I feel that I can't totally go off the medications.

So, right now, I'm sortof in limbo. I also have problems with my back now which I'm taking valium instead of the baclofen and the oxycodone for.

With regard to the Neurontin, I'm told by my IM doctor that 2700mg isn't a really high dose for me. The problem that I had with trying something else is that you have to ween off of it and ween on something else. So, inbetween that time, I was miserable. It's a couple weeks time before I was off one medication and on another one - which both of them didn't work for me. With doing this, I found out how much this medication really does help me. I didn't realize it until I was off of it.

Good luck you you.

*moderator edit*. am only 4 and half months into this syndrome.. and very scared ..trying my best to take control of my health..all the while the professional are insisting on the we will try this first approach...meanwhile im getting worse by the day..the battle is on..which is exactly how it is..my feet freeze up and a mass of burning stabbing..coat in ibuprofen gel and meds and make it work hard..plenty of physio and it does work regaining movement for now..now moving into other ankle and im freaking out..alot of people saying nuerontin the way to go..dr just gave tramadol ..told me negative for systemic lupus.. 2 hour later at my nurse appointment,she tells me these results are void as specimen sent in wrong colour tube..so dr tell me im negative for a test that was void lol..and im trusting these people..argh..all very new to me after being fit and very active person..mentally im still in denial..gosh im having a right rant on ..anyway im so grateful to find this site..lots of information and i feel soooooo less alone..
warm hugs and positive vibes right back at everyone..thankyou

Bevikins,

You said it and need to try and keep this "The battle is on." RSD can be very painful and very lonely at times. Just keep in mind that you have friends here that understand what your going through and we all have our good and bad days. I was on tramadol for a year, but this was with Neurontin. It took a while for them to switch me.

Your dr. is human and is probably embarrassed that the staff sent your lab in the wrong tube. I would say he didn't realize it, until the nurse said something. But when they figured it out, they should of contacted you to come repeat the test and owning to the mistake.

thankyou for your response, means alot...got some gabapentin from a friend..taking 3x300mg in 24 hours for the last week and still its the same and worsening by the day in the other foot..getting around on an ikea swivel chair..looking on here it seeems the dose im taking isnt enough to impact on this illness.. and my friend has none left.. and they are soooo expensive to buy online..does anyone no the side effects if you stop them abruptly..incase i cant get any to continue treatment before my appointment with my rhumy..and..when i cant move and the feet feel theyre ready to combust with pain should i present at a and e to get treatment,so they know how bad iam or am i supposed to rely on myself and information im aquireing here..i dont like to waste peoples time..if its not an emergency. *moderator edit* 2nd july when i see rhumy..4 and half months in and told it needs to be nipped in the bud before 6mth marker..??