Hello,
I have had RSD for 8 yrs. It happened after a hip replacement. I've been on alot of different meds. over the years. I've had all of the epidural blocks, I have a spinal cord stim that isn't doing the job. I tried to go off meds for a year, it was such a bad year. The methadone and oxycodone made my arms hurt so bad. After the year I was in too much pain. The Dr. agreed to put me back on oxy. It helps somewhat and helps me function and do things like "normal" person. I go to my appt. on May 16th and now that I have medical insurance to cover my meds, they want to put me on Topamax. Iam so afraid it won't work. I don't want to be drowsy. I've spent to much time in bed. Has anyone tried this stuff? Did it help?

Thanks so much,
Sue

HI SUE,
Well i also got rsd after a hip replacement. mine was about 11 years ago. i also got nerve palsy from the surgery.
i have not used topamax, but have been on neurontin for many years. i too held out and tried to use pain meds but none worked. the neurontin has helped more than anything and i would not go off it.
don't be afraid to try a new medication, just monitor yourself carefully for any changes and let your doctor know right away if anything feels wrong. actually a med like topamax or neurontin is more apt to help with nerve pain that narcotics. good luck and let me know how you make out.
joan

Hi Sue,

I wanted to give you this link:

http://www.medscape.com/druginfo/dru...gid=&drugname=

It's for a drug interaction program that might help keep your meds from causing you even more problems. I know all our Dr.s now have those little pda's that they use to check for this type of thing, but they aren't always accurate. My Dr. was upset and astonished when I brought several issues up to her... she had NO idea these two meds were a bad combo! Now she uses this link too, lol, to double-check her pda.

Hey Sue,

I was on topomax for abit. I think it was ok but no miracle. It is worth giving it a go - if it doesn't work then you can always come off it. Unforatunly there is no magic answer to RSD.. or ways to reduce the pain. Give it a couple of weeks and if it still doesn't help then bin it... you won't be coming off the oxy to try it, will you?

Best of luck with it! Love

Froggsy xxxxxxxxxx

Hi, Frogga,

Thanks for the reply. I think they want to take me off of the oxy. I don't want to go off. I went cold turkey once when I was on methadone and oxy. I have never been so sick in my life. I've been on nuerontin, oxycontin, and so many others. The oxycodone is the only one that did not make me sick and seems to allow me to handle the pain better. It still hurts so bad, but at least I can get out of bed, walk a little better. (my foot is starting to turn in and I have had foot drop since the hip replacement) I have sciatic nerve damge in 3 places. I can somewhat handle the nerve pain, but the RSD pain from my knee down into my foot is too much. I guess I'am lucky, its just now after 8 yrs feels like my other leg is starting to hurt and burn. I think I'll ask them to keep me on the oxy also. Its just hard, my family always makes some comment about how many pills I take.

Hope all is well with you,
Sue

Hi Joan,
I'am from MA also. My hip replacement went bad because arthritis ate all the bone away. When they got in there, my back side was all gone. They had to use metal plates to replace the missing bone. When they did that, they moved my sciatic nerve and damaged it in 3 places. I was put on neurontin right away, but it didn't work. I have right foot drop and this is where the RSD is the worst. I just want to stick to the meds that help the most. I know it wont get ridof all of the pain, but some relief is better than none.
Thanks for the reply. It helps alot to talk to someone about this. The only people who undestand are the people here.

Thanks so much.
Sue

Hi Sue K

I take topamax 50mg am and 50mg pm. I acually can't say if it really helps with the nerve pain that much. But I can tell you for me I really don't become drowsy with it but then everyone reacts differantly with medications. I wouldn't be afraid to try a new medication.. You never know what may work for you... I found that Cymbalta helped me more than some of the others and I didn't put as much weight on with it as I did when I was taking neurontin.
As Frogga said you can give it a try and if it doesn't work for you then you still have the Oxy to fall back on.
Wishing you the best...
Gentle Hugs
Dawn

Hi,
The more I read,I guess I'll give it a try. If it works then ok, if not I'll try something else. We'll just have to wait to the16th to find out.

Thanks,
Sue

Oh, Sue.. you poor thing, about arthritis eating away at the bone!! you mentioned going "cold turkey"?? Dr.'s are NOT allowed to make you go cold turkey!!! They gradually reduce the pain meds!! I am getting my percocetts reduced and that is the "best" way do do it.. gradually! A Dr. who takeds you off "Cold turkey.. is nuts in the head. I can see if you abused them, which you do not.. Us RSD users will try just about anything to get relief! If your P.D. is going to just adruptly have you go off the oxy, then tell him/her they need to take you off gradually. Prayers going out to you and as far as the new medication .. give it a try!! Love, Desi

it helps me.

I could not take neurontin the first time I had RSD in 2001, and they put me on topamax. It has helped my pain, headaches too. I didn't get much relief till I was on 200mg - 100 twice a day. Gradually worked up. The first week or two I felt really woozy and odd when taking it, but was able to go up in mg pretty fast after that. I have myofacial pain and probably fibro along with some migraines and (with the RSD) and the topamax helps all of those as well as the RSD pain.

I see people stop when they get to 100 mg if it does not help. My neuro has had me on as much as 300 to see what results were. At that rate, I had a bit of tingling in my fingers from it, but nothing else.

You will find that things will taste funny for a while, but I find that after a few months, that will go away. Soda pop will be the worst of it.

Good luck.
Jules