instead of neurontin or topamax without the effects - Reflex Sympathetic Dystrophy Message Board

panthrvamp · 06-24-2003, 11:13 AM

Hi all, I am still new to the boards but was thrilled to find it! I have had RSD for amost 3years Dx, 4years all together. I use to take Neurontin and 2700mg a day, but after 18 months started having all the nasty side effects, and we went to the topamax, could not tollerate that as well, so for a few months had nothign, then My Dr found Zonegran... He told me it had all the benifits of the Neurontin, WITHOUT any of the side effects. Of course at first I was like, yeah, right, sure. But low and behold he was right. It is great. we have slowly increased it and am up to 400 mg daily, 200am and 200 at night. Has anyone else used this?
I am also using the Duragesic Patch. some groups I have heard bad things about it, or that there Dr refuse to use it beacuse it is to strong. Is anyone else using it?
Hope all having a pain free day ( or as pain free as we can get)

Blessed Be

Deb

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Once upon a Midnight Dreary,
For the ravin' stole my heart,
Nevermore to belong to another.
For the Ravin shall always be a part of me,
But I am the Ravins' Nevermore.

Soxy · 06-24-2003, 11:33 AM

Hi! Just wanted to say welcome to the board! I have had RSD for over a year maybe longer. I should say I was diagnosed a year ago. At the time it was in the left foot. After 3 blocks, PT and meds it has been quiet. I now have it in the other foot. The whole mess may have originated in my lower back. Anyway, I think you will find the group here helpful, friendly, and always willing to listen even if you just want to vent. We all know how it is to live with this pain. Some of us do it better than others but we all do our best. Take care.
Soxy

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Don't wish upon a star..
reach for one!

cattys · 06-24-2003, 04:03 PM

Hi Deb,

I was started on topamax about a week ago was also on neurotin, So far so good. I really like the topomax. No bad side effects as of yet.

I never heard of the other medication you mentioned of in the post above.

Take care
Cattys

sharon1030 · 06-24-2003, 07:30 PM

Hi Deb!

I've had RSD for 17 years. I've been on Neurontin-couldn't deal with the side-effects. I've also used the Duragesic patch and that worked well for me. I can't remember exactly, but I think I started getting rashes from the adhesive and then I stopped that and went on M.S. Contin. Now I have a pump and that's been the best thing I've tried so far. Bye.

Sharon

panthrvamp · 06-25-2003, 09:04 AM

I was on the 25mg also, but I was always nausious and dizzy from the get go. I could not function at all, and well, trying to work full time is hard enough, but add that to it, I could not even read the computer screen my vision was so blurry. Apparently from what my Dr said the Zonegran is still a pretty new one to use, but he was really excited about it when he first told me and we tried it. I started it at 100 mg a day ( think that is the lowest it comes in) and am up to 200mg twice a day. Having NO side effects at all and its really cut down the burning sensation. I hope the Topamax works for you Cathy, if not mention this one, honest it really did work for me.
we had talked about using the Pump but, I started to reject the morphine which is why went to the patch. ON one of the other groups I am in someone told me to if you spray a inhaler on the spot before putting the adhesive on, it won't irritate. I have a bad alergy to some tapes and that was our main concern when started it. Have't tried the inhailer thing yet, but it will if starts eating my skin. When did my implant and went to pull off the tape, I had blistered so bad took like 3 layers off, that hurt almost more than anything!
Did you, or anyone that has used the duragesic find that certain areas of your skin were more sensatve than others to the tape? I could not use it on my back or my stomac, tore up my skin so just keep switching upper arms and areas.
Hope all have a pain free day, or as much as possible!

Blessed Be

( put on worng one first sorry! )