I know every one of us here is different. Still, I wanted to ask you the following, for those of us taking Neurontin, how much Neurontin are you taking? What's your RSD like?

I've been taking Neurontin (the generic Gabapentin rather) since September 2004, with great results on the pain. First they started the Neurontin at a low dosage, up 'till about 2700 mg a day (3x 300 mg). It's not the highest dosage, but almost. I needed some margin in case the pain got worse at some point. It didn't completely rid me of the pain, so I was prescribed Buprenorphine pain patches and Buprenorphine sublingual pills for breakthrough pain. This hasn't gotten rid of all the pain, but it is at a level where I can live with it (the balance between extremely tired and hurting is a hard one, though). I do get breakthrough pain several times a day, and at night. But I know, have learnt rather that nerve pain is hard to treat.

It's been almost 5 years for me, taking these meds. I am also on a muscle relaxant called tetrazepam for the muscle cramps. I usually take this before bed because it makes me extremely sleepy.

My RSD was diagnosed almost 3 years into it. I have it in both legs fully (fully progressed RSD) and last year it spread to my arms/hands.

If on Neurontin, how much are you taking? And if so, what other medication are you taking besides the Neurontin.

I have tried several times, wanted to cut back on so many meds (against doctor's advise) but I have had to admit several times that the pain is intolerable without the medication.

I think its great that the neurontin is working for you.

But i think many others will agree with me when i says neurontin is a worthless drug for most of us. i took neurontin way back when i first started with RSD and was taking 3 300mg three times aday and after a time my doctor and i agreed it was useless as it did nothing at all. Over the years some doctors have re-tried me on it at the same dosage which is 2700mg which as you said u just got to. But its worthless even when added with Oxycontin 80's twice a day and methadone. Almost all pain meds are virtually useless.

Marleen,

I am currently taking the following meds:

Neurontin 2400 mg (per day);Cymbalta 180 mg;Xanex 25 mg x3-4;Diovan HCT 160/25 mg (HBP);Hydrocodone 10/500 mg x 3-4;Meloxicam 15 mg;Ambien CR 12.5 mg x1;Ultram ER 300 mg x1;Flector Pain Patch; Lidoderm Pain Patch(switch off and on with Flector pain patch)Ketoproten/Glucosamine Pain Cream;Protonix 40 mg x 1(GERD);TENS UNIT; Water PT twice a week; Psychologist seen every 2 weeks; and PM doc seen every 6 weeks. Meditation everyday.

For the most part, my pain is do-able;however, I still have break thru pain. I have good days and bad days..like everyone here. The change in weather makes my pain level shoot through the roof, just as stress has the same impact on me. I stay inside my home most of the time.

I am an insomniac(have gone 48 hrs straight no sleep, and then drop from exhaustion for 4 hrs) since the RSD came into my life. I have not slept more then 4 hrs. at a time. I believe Neurontin does benefit me. The burn is still there, but no where close to the inferno I suffered before Neurontin. Cymbalta helps with depression/pain and does also work with the neuropathy. Xanex helps with anxiety and muscle spasms.

My RSD came about by a WC injury on 3/24/07;diagnosed 06/08. I began drawing SSDI in 1/2009.


Dew

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..??