L4UR3N Posted May 9, 2011 Report Share Posted May 9, 2011 I did a search and could not find a topic on this, so hopefully it was not posted before.Has anyone watched this video? It's beauty queen Kelly Ruggiero, speaking out about her daughters stuggles with dysautonomia: http://www.redorbit.com/news/video/top_news/2/beauty_queen_mom_raises_awareness_of_dysautonomia/34607/?src=mrssWhile it's great that she is promoting awareness, why on earth doesnt it say what helped her daughters?!?!?! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 9, 2011 Report Share Posted May 9, 2011 I like this! Any attention is good. I can't believe how many kids are getting this illness. I wish we knew what on earth causes it. Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted May 9, 2011 Report Share Posted May 9, 2011 I saw this on the POTS page on Facebook a long time ago. A friend of mine whos daughter also has POTS saw it and we messaged about it. She found out that they used the anti-anxiety medicine venflaxine (spelling?) which is the ingredient found in the drug Effexor. I told her that I had actually tried that way before I found out I had POTS and it made me feel terrible and they took me off of it cause they had never seen that reaction in someone. Little did I know that I am one of those POTS peeps that puts out way too much norepinephrine and that's what Effexor does it incresase the norepi! It may work for those who dont have that problem and need the extra norepi to raise blood pressure perhaps! Hope that shed some light on it!KC Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 9, 2011 Report Share Posted May 9, 2011 How frustrating! It's great that she's trying to raise awareness, but I cannot believe that she doesn't talk about what helped her daughters! Of course, many children who get dysautonomia grow out of it, and different drugs work on different people - especially kids to adults - it's unbelievable that her doctor told them there was nothing they could do for it until they hit 20. Errgh. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 9, 2011 Report Share Posted May 9, 2011 She has actually posted on the medhelp forum and said her daughters take a high dose of Cymbalta plus abilify. I asked my son's current doc to try this and so far it is helping a lot. He still has symptoms and unable to go to school, but much better than he was doing.Christy Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted May 9, 2011 Report Share Posted May 9, 2011 Christy,Is Cymbalta a SNRI? I have seen Abilify on the commericials but unsure what it does. Kudos for you guys for trying it! KC Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 9, 2011 Report Share Posted May 9, 2011 Christy,Is Cymbalta a SNRI? I have seen Abilify on the commericials but unsure what it does. Kudos for you guys for trying it! KCYes, it is an SNRI. I am not sure how Abilify works, but the doctor kind of explained it like a 'booster' for the Cymbalta. It supplements the Cymbalta. So far, so good. While it is not making him symptom free like her daughters, it has brought some relief.Christy Quote Link to comment Share on other sites More sharing options...
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