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Reply
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Thanks for the info annie. The doctors have changed my meds from Nuerontin
to Topomax and let me tell you it is working out great for me. I take lower
dosages, and have the same pain relief I was getting from my mega doses of
the neurontin. I am also finding fewer side effects from this drug as well.
I am not saying that it will work for every one but I know that it does seem
to be working for me. I am also losing weight which is wonderful. I am no
longer 5'3" and 172 lb....last weight check was 166 and falling. My weight
gain with nuerontin was horrible as it has been for my mom and my sister
(the are on it for other reasons).
As for the shakes I am not nearly as bad with those either. The ones I do
get are strictly from the RSD (only on the affected side). I don't get the
bad headaches any more either. Vision wise I am no better off but then a lot
of my vision may be the fact that I may have RSD on both sides of my face.
Yes gang something I have not had the chance to tell you all yet.
Many of you know I had to have some tests run to determine if I had glaucoma
or RSD in my left side of my face. Well the tests are looking like RSD in
the left side of my face. Now my hair dresser is saying she is seeing things
that are pointing to signs of RSD in the right side of my face as well. I
have also noticed some changes in the right side of my face as well. I have
pins and needles and burning in my face a lot and a lot of spasming and
such. Oh well seems to be the story of my life. There are a lot of other
things going on too which is why I am not on a lot. Hang tough and I will
return to myself and get you all caught up. Your leader has not abandoned
you, just taking a me break for a little while.
Luv and hugs to all
Janine
>From: "RSD Helpline Support Group" <[email protected]>
>Reply-To: "RSD Helpline Support Group"
><[email protected]>
>To: "RSD Helpline Support Group" <[email protected]>
>Subject: Re: questions
>Date: Thu, 31 Jul 2003 07:23:45 -0700
>
>-----------------------------------------------------------
>
>New Message on RSD Helpline Support Group
>
>-----------------------------------------------------------
>From: annie5701
>Message 4 in Discussion
>
>HELLO sweety,,, sorry took me so long,,, as I been having troubles with
>msn,,, got it back on good puter now!!! question about neurotin,,, it does
> cause vision problems. an shakes also!! There are now big alegations
>about the company that puts out neurotin also. I am going back an forth to
>Denver for testing as with the shakes,, has gone too out of control spasms.
> As I have cut the doses down of neurotin,,, now seems like my mind is
>coming out of fog also able too think more clearly!!!seems like i also have
>a little more energy!!! They are not sure what all the side affects are on
>neurotin,, it is sure is rotten on us that is for real. I have been on it
>now for a little over 4 yrs. I would be asking the dr. also about the ***
>new screams about this drug*** IT can also cause severe mood swings
>also!! I will let you all know more about all that I find out from the
>drs and testing they are doing on me also as I find out. I go back too
>Denver next week. As always be careful of all meds an the side affects. I
>know it is hard for us. But one secret too keeping pain under some kind of
>control is not letting it get too bad or severe. It sure does not help
>going in to dr office saying we having a good day when we are at high
>peak of pain!!! huggerzzz too all annie
>
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