Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-27-2012, 07:24 PM #1
KathrynL KathrynL is offline
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KathrynL KathrynL is offline
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Default Topamax: How helpful is it?

As most of you know, after 8 years of remission I have RSD again, but now in my left arm. The neuro started me on topamax, which I've never taken before. I've done 1 week of a 25 mg tab in the morning and a 25 mg tab in the evening. I'm supposed to do that for 2 weeks, and then increase it to 50 mg in the morning and 50 mg in the evening. I've noticed a tiny, tiny bit of a difference in my pain levels, but that might just be wishful thinking.

For people who have taken topamax before, how helpful is it? Does it really reduce your pain levels and help you regain function? My burning pain is constant at varying levels, but is mostly manageable. However my movement is very poor. I have stabbing and aching pains in the upper arm and shoulder that prevent motion and the whole shoulder area is stiff. My arm is pretty much just for show. I can type, because my hand is unaffected, but I can't lift anything or hold anything. I can't raise my arm to brush or wash my hair. I can't reach with it. I can't drive and I can't work.

I'm off of work for two months and I'm really hoping to return. I reached remission once, and I'm crossing my fingers I can get there again. I tried neurontin before, but it didn't seem to do much for me. Do I have a chance with topamax?

Are there better treatments I might have a chance with again?

Should I go straight for the nerve blocks, since they did the trick before?
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Old 05-28-2012, 08:05 AM #2
Janeaux Janeaux is offline
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I love topamax. I't the ONLY medicine thats brought down pain for me. Only downside is if you are in child bearing ages. You can't take it pregnant and can't breast feed with it. Other than that, it's been wonderful for me personally.

Quote:
Originally Posted by KathrynL View Post
As most of you know, after 8 years of remission I have RSD again, but now in my left arm. The neuro started me on topamax, which I've never taken before. I've done 1 week of a 25 mg tab in the morning and a 25 mg tab in the evening. I'm supposed to do that for 2 weeks, and then increase it to 50 mg in the morning and 50 mg in the evening. I've noticed a tiny, tiny bit of a difference in my pain levels, but that might just be wishful thinking.

For people who have taken topamax before, how helpful is it? Does it really reduce your pain levels and help you regain function? My burning pain is constant at varying levels, but is mostly manageable. However my movement is very poor. I have stabbing and aching pains in the upper arm and shoulder that prevent motion and the whole shoulder area is stiff. My arm is pretty much just for show. I can type, because my hand is unaffected, but I can't lift anything or hold anything. I can't raise my arm to brush or wash my hair. I can't reach with it. I can't drive and I can't work.

I'm off of work for two months and I'm really hoping to return. I reached remission once, and I'm crossing my fingers I can get there again. I tried neurontin before, but it didn't seem to do much for me. Do I have a chance with topamax?

Are there better treatments I might have a chance with again?

Should I go straight for the nerve blocks, since they did the trick before?
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Old 05-29-2012, 01:49 AM #3
Heather Rae Heather Rae is offline
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Heather Rae Heather Rae is offline
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I started taking Topamax about 5 mos ago for headaches. I'm not 100% sure the are from RSD (knock effect as I've seen it referred to) or from the damage I sustained to cervical spine in my accident. It doesn't help with the neck pain and its even hard to turn my head or brush my hair sometimes too. But whatever was causing them, the headaches were pretty fierce and happening almost daily. Topamax has gotten rid of about 80% of them now at 100mg per day. I have RSD in my leg and unfortunately very little improvements thus far. Trying Ketamine infusions currently for the RSD in my leg. I have tried Lyrica and Neurontin both in the past with 0 pain relief and had horrible side effects. Fortunately this med works! Did you notice any tingling with your fingers as you were tapering up on Topamax too? How long did the blocks last before? Could you do both? My physical medicine doctor has also suggested trying trigger point injections for my neck as well. Have you ever tried them? They may help with the stiffness in getting the spasms to release. I'm somewhat afraid to try it though.
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