I had horrible side effects with Neurontin. I was sleeping about 16-20 hours a day. When I was awake I couldn't talk, put sentences together or thoughts in order. It was horrible and I was only on 300mg, can't even imagine what a higher dose would have done to me. I stopped it and have refused to try Lyrica because of the horrible side effects I experienced previously with Neurontin. SOme people get very good results from this medication, I don't know how much it helped me, but the side effects were too much for me to handle. Good luck I hope youhave better results than I did.

I have been using Neurontin for a few months now an have increased the dose up to 1600 mg. Dr. Shwartzman doesn't want me going any higher then that but honestly ,I'm not sure it's really doing much for me anyway except for making me somewhat nauseaus, dizzy and tired.

I did take cymbalta and lyrica in the past and had minor side effects with each (this was before I knew it was RSD). At this point I'm considering requesting going back on one of them. Cymbalta seemed the most helpful. It is awful that they all do cause weight gain tho but it's better then pain.

Feel better


Dawn

Hi, I was on both neurotin and then changed to lyrica. 3200 mg of neurotin for a long time, and 400 mg of lyrica. They both helped the burn, lyrica more than neurotin. I gained a LOT of weight and asked to be taken off. I'm gradually losing the weight. There are other drugs that help with burn and pain. Cymbalta is one-anti-depressant-I'm on 120 mg. Vicodin-4 pills a day-used to be on 6. Lorazepam really helps, becaue it is an anti-anxiety when calms our system down and helps a lot. I take seroquel and sleep 10 hours a night straight. I take 2 high blood pressure meds. I've had RSD 15 years-full body and internal organ involvement. It's tough, but exercise helps, massage therapy helps, meditation, prayer, music, visualization, puzzles, distractions do help. I just got a camera for a hobby. Playing cards
Hope this helps you. I'm also getting a compounding cream of ketamine, lidocaine, and anti-inflammatories for skin application to help the burning pain.
Welcome to NT, you'll find many caring, informed friends here.Please stay with us. rsdrx.com puzzles list helped me get more informed. Dr. Hooshmand practied RSD for 40 years in Florida-now retired, but still can research on his website. Also RSDSA is the national organization, can put in your zip code to search for support group meetings and also get RSD drs. names. Take care, your friend, loretta

Hi All,

Loretta just reminded me I also used a special compounding creme w/ketamine,lidocaine and other medications which did work great when my arm/elbow was burning with fire. At one point it was so bad my daughter would say "you can feel the heat coming off your arm". That creme was great it had to be ordered through a special lab. My insurance did pay for it minus my co-pay and a normal 8oz tube would last about 3-4 months. Keep in mind I was using it on a small area. I remember it did work.

Thanks Loretta.

Gabbycakes

Keeping in mind we are have different reactions to our medications. I have been on 2400 mg. of neurontin for 9 years. I have full body RSD and this drug really helps with my burning and pain. When I miss a dose I can tell. I have gained a lot of weight but it could be from the cymbalta and periactin. I also am a lot less active.

I hope you find what works for you and that you get relieve soon.

I am on neurontin and now am on 2700 but not sure I feel any benefit. When I was first increasing this med I thought I did though. I tried this med a few years back but quit cause of the side effects I felt which were a dizzy out of it and pressure in the head. Then tried it again about a year and half ago and pushed through the side effects gradually increasing and those side effects did wear off. Just the first few days of the increase are ruff. Like others said we are all different so for myself I just try to give a med a chance and not fear the side effects etc so much and hold to hope it can bring relief. Hope it brings your relief.
Dawn that is odd Dr S said to not increase more then that dose. What was his reasoning cause I heard many people for relief need 3500 even?

hello I have meralgia paraesthica on left leg and bad pain from diabetic nuropthapy ankels in pain do not operate an automobile or machinery till you know this drug i use it for nerve damage it will make you a little dizzy and slow responding when first used

I have RSD and I have a lot of pain and spasms. I use Gabapentin everyday and it is amazing. If I didn't take this I would need many more pain meds. I was taking 1800mg spread through out the day. I did reduce to 1200mg a day, mainly because I have an issue with taking sooo many pills. I have been taking this now for 4months and I have actually lost 18lbs. This could be because the 1 percocet I take at night reduces my hunger, I often find my self missing dinner because the precocet reduces my hunger so much. I take 2 300mg Gabapentin and 2 2mg Zanflex at night, I do get a little hungry but often will pass out before I am so hungry I need to eat. The 2 & 2 combo helps me to get a straight 4-6hrs of sleep uninterupted painless sleep. I try very hard to eat 5 fruits and 5 vegies through out the day because I am worried abouth the weight gain. For me I would gain 100lbs if the pain would go away. At 1st I was a little dizzy and when I take 2 I am a little dizzy still. I take 1 in the morning so I can make it through work, no work no insurance no doctors. I take 1 on my way home from work, and the 2 at bedtime. I found if I took them too early at night then the "munchies" would be a lot more uncontrollable. That's why I take the 2 &2 combo right before bed. I would recommend Gabapentin, start with a small dose (300mg or maybe 300mg 2x a day) until you are not so dizzy. I have found great relief of my pain from the Gabapentin and Zanaflex combination. I wish you much luck

I took it for 6 months every month dose got raised until the point I could barely speak or think , I would stutter really bad and couldnt think of what i just ordered for diner 2 minutes prior , Also gained 15 months in same time i was on it . Now After being of it I lost all that weight

I have neuropathy and have been taking 600mg a day for the last year, no side effects at all and its made it so I dont have to take nearly as much pain medication for the burning in my feet.

Now, my husband just started it about 2 months ago. If you ask him if it helps, he will tell you he doesnt notice a difference at all. But he has no side effects from it either. He also takes morphine, percocet and a dozen other medications, like cymbalta, celexa, (that makes 3 anti depressant types of meds with the neurontin)... he has a very severe case of rsd, so hes taking everything that work comp will cover. Im thinking that neurontin doesnt by itself do much at all but combined with other meds maybe works best. *shrug*