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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Has anyone used Neurontin(gabapentin)? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/139108-neurontin-gabapentin.html)

Momlovetobake 11-22-2010 05:40 PM

Has anyone used Neurontin(gabapentin)?
 
I have just been prescribed this drug and I was wondering what your thoughts are on this?

ginnie 11-22-2010 05:50 PM

med.
 
People react very differently to this medication. I felt so tired and and a bit loopy. I didn't like the side effects, I was told they deminish in time. I didn't have much in the way of patience so I asked to discontinue it. I try very hard to except a medication, and this one really didn't make me feel very good. Others have great success and have little in the way of symptoms, and it helps their pain. Ginnie

Momlovetobake 11-22-2010 05:54 PM

I had this before long ago but discontinued it also because i did not feel right. He said things could be different now. Im very weary about meds but im at the point where im going crazy and im in constant pain and tears.

Mycah 11-22-2010 08:22 PM

I've been on it for about five months and it does help my burning pain. After gradually working my way up I am now on 2400mg/day. A couple of my doctors said this medicine has few side effects, ha. I have noticed blurry vision and a little loopiness but it could be the Oxycontin I take.

Good luck.
Nancy

AintSoBad 11-22-2010 10:19 PM

I've never taken it. But have some friend that do. They seem to agree that there can be Major Weight Gain.
And, alone, against rsd, isn't a magic pill, as they haven't found one yet....

Good luck!

Pete

asb

finz 11-22-2010 11:00 PM

Tons of threads on here about Neurontin and it's cousin Lyrica.

Flushing, fatigue, weight gain, and diabetes are my worst side effects from it.

gabbycakes 11-23-2010 03:11 AM

Quote:

Originally Posted by finz (Post 718912)
Tons of threads on here about Neurontin and it's cousin Lyrica.

Flushing, fatigue, weight gain, and diabetes are my worst side effects from it.

Hi,

I took both neurontin and lyrica. I had problems with being sleepy I mean I remember driving and almost falling asleep which is not me and the weight gain forget it I gained so much and even after I went off it the weight still kept going. It seemed to take a long time to get out of my system. Now I'm down 60lbs but I'll never take it again. Yet, I have heard people getting great results it's just not for me.

Good Luck

Gabbycakes

finz 11-23-2010 03:38 AM

For me, the side effects stink, big time......but it's better than the pain.

lorigood243 11-23-2010 05:15 PM

i have taken it 4 months and it does help my burning....i am horribly sleepy but didnt realize it was from this...but its good not to burn. havent had any weight gain..but its no cure thats for sure.
lori

Lisa in Ohio 11-23-2010 07:28 PM

I tried this med a long time ago and had severe side effects. I would get very dizzy and I finally quit taking it when I passed out outside in the middle of the winter while taking out the trash. I woke up in a snow bank after I don't know how long and it was a long time before I could get myself up and back into the house. Of course I then had a flare from getting so cold from laying in the snow. I do know that many doctors like this drug for RSD, it seems to be a standard of care prescription. Good luck to you and remember that I am just one person, many others take this with no side effects. Lisa

sherimac 11-23-2010 11:47 PM

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. :)

Reddawn600 11-24-2010 09:13 AM

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
:hug:

Dawn

loretta 11-24-2010 12:45 PM

Quote:

Originally Posted by Reddawn600 (Post 719388)
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
:hug:

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

gabbycakes 11-24-2010 02:39 PM

Quote:

Originally Posted by loretta (Post 719446)
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

SBOWLING 11-24-2010 06:59 PM

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.

daniella 11-25-2010 08:34 AM

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?

jemjeff10 11-25-2010 10:45 PM

nerontin - gabapentan
 
Quote:

Originally Posted by Momlovetobake (Post 718823)
I have just been prescribed this drug and I was wondering what your thoughts are on this?

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

painfull 11-26-2010 07:31 PM

I use Gabapentin
 
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

DONTTOUCHIT 11-27-2010 01:46 AM

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

MarriedtoRSD 11-29-2010 10:00 PM

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*

lou68847 11-30-2010 10:43 AM

I have been on it for about 9 months now, I have gained weight also , But not
been very active as I got let go in July from my job.
When I first started taking it I felt loopy . That has gottten better.

unicorn1979 12-01-2010 05:30 AM

i hate it
 
Quote:

Originally Posted by Momlovetobake (Post 718823)
I have just been prescribed this drug and I was wondering what your thoughts are on this?

i took it for about a year before stop with out get dr ok when ran out and could not get any for few days then saw how it messed with my mind forgot so many thing could not pay me to go back on that med

jemjeff10 12-26-2010 11:27 AM

user of neurontin
 
Quote:

Originally Posted by lou68847 (Post 721000)
I have been on it for about 9 months now, I have gained weight also , But not
been very active as I got let go in July from my job.
When I first started taking it I felt loopy . That has gottten better.

well I have been sick with meralgia paresthetica pinched nevre on my left side since 2003 too that simmer out of work pain was bad i was on that neurontin then now since may 2010 i been diagnosed with diabetes my leg is just on fire pain is a 3 inmorning and a 7-9 at evening taking metformin glyburide lisinopril atenolol for hp and diabetes feet are burning hurts to walk legs and calf swollen sore i still take neurontin two - 3 pills a day 600 mg little relief but becarefull they can make you pass out eat with the pill I take percocet they help feel like I may have to go out of work cannot function safely and pain hurts puting pressure on left side walking I gained weight which does not make sense I diet because of diabetes I an up 20 lbs since may when I started on them again ! good luck !!!

Reddawn600 12-26-2010 07:35 PM

Quote:

Originally Posted by daniella (Post 719654)
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?

Daniella,
I'm not sure as I was getting a ketamine infusion while speaking with him so was fairly out of it, I just remember that was what he said and I confirmed it with the infusion suite nurse before I left. Maybe it was due to other meds I'm on? I'm not sure. However, I've gone up to that level and really haven't noticed any difference. It was interesting you mentioned pressure in the head as I've had that but with everything going on, was unsure what it was due to. I think I may try going completely off it for a bit to try to see if it's really helping me at all.

yiisd 12-28-2010 08:24 PM

Neurontin
 
Quote:

Originally Posted by Momlovetobake (Post 718823)
I have just been prescribed this drug and I was wondering what your thoughts are on this?

I have taken both Neurontin and Lyrica. Lyrica helped the pain better than any other drug I've ever taken, but the side effects are unbearable. I gained an average of 8 pounds PER MONTH, EVERY MONTH that I took Lyrica. My vision also decreased to the point that I no longer can pass the State Driver's License Test - ( yea - real bummer ). I quit taking it, hoping my vision would get better and my weight would return to pre-Lyrica times, but 2 years later and NO IMPROVEMENT in either area.
I would definitely give Neurontin a try. It was not strong enough for me, thus the Lyrica for me, but perhaps it will help you. It does require an adjustment period, but many drugs do that and it is worth it .... after all .... RSD is a long term battle.
Good Luck with the Neurontin should you decide to try it - and my suggestions would be to try it if your doctor feels it is appropriate for your symptoms.

birchlake 02-26-2011 08:47 PM

I have had CRPS since September of 2008. In only one of my toes, for cripes sakes. (byproduct of 2 surgeries).

Neurontin has been EXTREMELY effective for my symptoms.

I take 600 mg, three times a day.

Per doctors orders, I tried weaning myself off of it, but it didn't take long before symptoms became unbearable, so back on it.

It has really been a godsend for me. A bit of dry mouth and some occasional nausea, but not bad really.

It is often the first medication prescribed for CRPS. And for good reason IMHO.

Reddawn600 02-27-2011 11:08 AM

I was on it for for about 8 months up to almost 3,000 mg and finally stopped it when I started Topamax and I now realize, I don't think it was ever really doing anything for me at all.

I think i benefit more from a very small amount of Klonopin to keep my nerves calm.

It definitely helped put about 20 pounds on me but that's about it.

Dawn

peppermintpatty 02-28-2011 02:14 PM

It was one of my original meds. I did have some degree of success with it, although I did have to repeatedly increase my dosage. I also gained a significant amount of weight, and ultimately switched over to Lyrica.


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