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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I guess this new thread could have been added on to the other thread that was concerning questions about Topomax, but that one was starting to get so long that I thought a new thread would be more appropriate.

At my last doctor's appointment I told my doctor that I really wanted to try Topomax in place of taking the Lyrica that I am already on. The main reason I wanted to do this change was because of the weight I have gained. I know that allot of you know how I feel about the weight I have gained and how it is effecting me not just physically but emotionally.

My RSD started in my right foot and now is in my left foot and both legs up to my knees. I think that the extra weight is also making the whole situation worse on me.

I can't say that my doctor was against this change but I didn't get the feeling that she was over joyed about it either. But perhaps she was just having a bad day and I read too much into it. Anyway, she told me that I cannot just stop taking the Lyrica. I have to wean off of it. She let me know that this may not be very comfortable for me but that if I was willing to wean off of the Lyrica then I could try the Topomax.

I don't think she realizes how much the weight gain is bothering me. Maybe I am not getting this point across to her very well! But I like to think that my communication skills are one of my best assets. That may come from teaching for so long but I truly cannot think of a different approach to getting this issue across to her. Perhaps if I took off all my clothes, then she would see what I mean!!! :) Not a pretty picture :eek:

I know that I my husband tells me that I haven't gained that much weight! But I don't want to even hear him say "That Much" because "that much" means that he can notice it! Plus, I know when he is just trying to be nice and when he is telling the truth.;)

So when I go back to my next doctor's appointment, which is Feb. 19th, we will see how I am doing. If I have tolerated the weaning then I will be able to start the Topomax.:)

My question is (finally I get to the reason for the new thread uh?), has anyone else stopped taking Lyrica and switched to Topomax? If so what if any were the side effects that you felt? I guess I would even be interested in anyone who may have been prescribed Topomax from the start without even taking Lyrica.

I am just curious if my body will need some time to adjust to taking the Topomx. I even want to know if someone who has weaned off the Lyrica, if their bodies had a difficult time adjusting not taking the Lyrica. Or perhaps because I will be starting the Topomax immediately after weaning off the Lyrica, I will not experience any problems?

I am so looking forward to trying this change of medications. I am hoping that the "fog" that I sometimes feel with the Lyrica will be lifted. Even though I am excited about the Topomax, I am still thinking realistically. I realize that NO two people have the identically experiences and results while taking the same medications. Why Topomax may be a "wonder drug" for some and they will also notice some weight loss, perhaps other people cannot tolerate the side effects and also do not lose any weight. But I feel I must at least try something different. I can't keep doing the same thing but yet expecting different results!

If I happen to not be one of the people that do not have any luck with Topomax, I will learn to be fine with that. Did you notice that I said, "learn"? No, I'm just kidding, I'll be fine. What else can I do? It will be what it will be and I will be OK with however the Topomax works or does not work for me.

Enough rambling and venting. I tend to do that once I start typing, sorry about that. It's like all these thoughts that have been in my mind that the people I love and that love me really don't want to hear. Not that they are mean, OK one unknown person (my sister) can be but no one else, they just don't understand or get it when I talk about what this RSD is doing to me. So when I get on here everything just flies out of my mind and into my fingers and onto this message board. And since I am able to type fast, it is almost like I am talking to you all!!

I would seriously though appreciate any feed back that I get! Thanks,
Chris
My husband, who has RSD, was weaned off Lyrica and onto Topamax. As I recall, he decreased the Lyrica at the same time he increased the Topamax, so he was not totally off the Lyrica before starting the Topamax. So there was a period of time he was on both, and then just the Topamax. You definitely need to wean off it slowly. Topamax did not work for him because of the side effects. He lost weight, but he also became very depressed and slept all the time. I think he lost weight because he slept until 5:00 PM and had only one meal a day. Sorry, but I thought you should know. He is back on Lyrica now, and his weight has stabilized after gaining back the weight he lost.
Sunny
I just quit taking Lyrica a couple of weeks ago now. I came down from 150mg to 75 for a little bit then stopped taking it altogether. It didn't bother me nor did I have any withdrawl. When you wean down you shouldn't feel anything really. Well, if your pain and/or burning goes up as you cut back then that's nothing more than the rsd kicking up because the lyrica was helping them both stay low.

I don't know or understand why she would want you off one before starting the other really....so whatever her reason you should be able to go the your next appt and tell her that you've done fine with no "nasty side effects". :)

You might have some side effects when you begin the topomax but then again you might not. Some people have those annoying side effects when they start a new med, even when it's similar to one they were already taking. You'll just have to see about that but I think you won't have much if any adjusting to do when you start taking the topomax.

Hugs,

Karen
I don't have RSD but do have a compressed nerve from multiple foot surgeries. I switched from Lyrica to Topamax because I had gained a few pounds on Lyrica as well as from just being less active the last couple of years due to the foot surgeries. I hate to say that I did not have a good experience with Topamax. I am in the process of tapering down now. Your experience may be really good and I hope it is.

I didn't really have a lot of weight to lose and I did lose 8 pounds but the price I paid to lose it was not worth it! I have had horrible diarrhea for the entire time I've been on Topamax and no appetite. Honestly, you would think I would have lost more weight than I have. Probably haven't because all I've been able to eat is bread. My doctor started me slowly at 25 mg a week, working up to 100 but as soon as I hit 50 mg the diarrhea started and got steadily worse. I had heard that sometimes it goes away after a month but I am now in week five and back down to 50 mg and still have it.

It did have a mood stabilizing effect which I think I would have really enjoyed. It was fairly effective for the pain, but I think the Lyrica was better. The side effect I had with Lyrica was blurred vision. I'm not sure what, if anything, I will try now.

I really hope it works for you. I had high hopes and am really disappointed that it didn't for me.
Hi Chris,
We have such familiar cases of RSD -- I too have hang-ups about my increase of weight since being diagnosed. I too wanted to try Topomax simply because it can be a good pill for weight loss for many, not all. My doctor wouldn't let me go off the Lyrica though, so the Topomax got added. Holy cow, my experience was awful! Very severe brain fog -- Much worse than with high dose of Lyrica so I went off of it. As much as I hate my weight gain, I would hate increased pain a whole lot more. Lyrica has much better ability to lessen our pain.
It was necessary to add Norco to my meds -- Lots of pain, lots of stiffness and I'm hating it. I was off today (I'm contracted 15 hours at middle school) and cried almost all day. Guess I needed a good cry. Anyways, I phoned my doc mid-morning, spoke to his nurse while crying and asked for some help. They called back and said I could double up on the Norco from 2 daily to 4 daily. If that doesn't help me, then I'm to make an appt because he's in tomorrow and Friday. I've been offered blocks, but I'm afraid of them because it's so close to the spine, plus I've read on here that it can cause spread (and who needs that?). My feet, my legs, my knees are just killin me. It's weird, most of the time my left foot hurts really bad -- that's where this RSD began and for many months, I really thought it was under control but not anymore.
Guess that's it for now, you take good care -
Deb
Blocks really aren't that bad and can be a good thing. As for them causing spread.....that's not true. The thing most likely to cause big time spread is an scs. I was scared too but you get to put to sleep,it takes a couple of minutes and then hopefully you get some pain relief and if that happens,then ideally each successive block gives you more relief each time. They work on a cumulative effect. It doesn't always work, but you never know until you try.

Hugs,

Karen
I've seen a gradual decrease of perhaps 20% or so in my symptoms since starting the SGB - my first was 12/24 and my 2nd was 1/8. I have a 3rd scheduled for this Friday.

Before the blocks I felt like my RSD was spiraling out of control. With the onset of winter weather I was just a mess - I felt like I was getting worse by the day. While I am by no means better, that anxious, scary feeling isn't nearly as bad. I have to say that I have also doubled the dose of Percocet I am taking, to probably close to 4 pills a day (I take the weakest dose, and only 1/2 a pill at a time). The meds have helped with my headaches - they were so bad that I used to wake up with them and they caused me to vomit in the morning. I also have a great PT that I see 2x a week that I started seeing a little over 3 months ago, he has helped me a lot, too.

So I guess it's a combination of things that have made me feel a bit better and helped calm my anxiety. Definitely the blocks have played a role. I need the Stellate Ganglion blocks, which are administered in the neck area. If your legs are involved then they would do a lumbar block, which is likely much easier to tolerate. In any case, you can ask for a sedative and they are over quickly. In my opinion they are well worth a try.

Do you have a good PT? I was referred to mine through my PM doc and he is the best (I have had terrible PT in the past, so I know the difference). Perhaps your doctor can help you find someone that knows about RSD?

Take care of yourself and good luck. XOXOXO Sandy
I agree with Karen.. Blocks are not that bad.. and I don't think they cause spreading.. They may give you a flare up for a day or two but so does other things.. Blocks can do a lot of good for some one just starting out with RSD.. or they would not even offer them.. Thats first place to start.. The SCS is invasive.. That I can see causing major flare ups to spreading... I have to agree with you Karen ... Your so smart lol lol
Deb,
I know it sounds scary.. having a needle next to your spine.. They are highly trained people who do this.. I think you should try it.. You haven't had RSD all to long.. It may do you wonders.. If you don't, then your always going to wonder.. if that was the way to go.. I just hate to see you wait to long.. then its to late.. Just keep it in your thoughts but don't wait to long..





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