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.