mrsdavidson8605 Posted May 15, 2008 Report Share Posted May 15, 2008 Well, I found an electrophysiologist here in Wichita, who at least has a clue about POTS. That's a step in the right direction. But he put me on Ritalin (sp?) to try for a few weeks. I was on it at the begining of the month, but had to stop bc I got bronchitus. He said he does not want me to take it long term bc it is habit forming... that doesn't make any sense to me... why start something that is possibly habit forming? He's going to try the Ritalin and Mestion in combination next, bc i've already tried all the meds that they suggest for POTS. He also said something about a study going on where they go in and burn the fatty tissue around the heart.. anyone heard anything about that? ugh.. i'm so frustrated... it's been a year and a half straight of no relief. I'm really feeling terrible. I got bronchitus 3 weeks ago and haven't been able to go back to the Y to workout... i'm really hoping they can find a good combination of meds SOON...... Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted May 15, 2008 Report Share Posted May 15, 2008 I was trying the generic form (methylphenidate) and it worked okay, just like Mestinon works okay. I didn't have the 2 together though. Dr. Low replaced the Methyl with the Mestinon. The side effect that was hard to tolerate was irritability. I felt like I just wanted to go off- POTS didn't seem to get better or worse after it. Quote Link to comment Share on other sites More sharing options...
mrsdavidson8605 Posted May 15, 2008 Author Report Share Posted May 15, 2008 I was trying the generic form (methylphenidate) and it worked okay, just like Mestinon works okay. I didn't have the 2 together though. Dr. Low replaced the Methyl with the Mestinon. The side effect that was hard to tolerate was irritability. I felt like I just wanted to go off- POTS didn't seem to get better or worse after it.Yeah I'm on the generic too.. I feel terrible on it right now... hmm it's such a guessing game. oh well, guess I have to keep trying. thanks for the post. Quote Link to comment Share on other sites More sharing options...
wireless Posted May 16, 2008 Report Share Posted May 16, 2008 Yeah keep trying I suppose Methylphenidate is in Dr. Grubb's paper as an alternative for people who can't tolerate Midodrine, and a lot of POTS people have tried Adderall which is similar to Ritalin. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted May 16, 2008 Report Share Posted May 16, 2008 I have been taking Ritalin 20 mg SR for 3-4 years. The only times I was off was when I was in ICU.For other hospitalizations they still had me take it. I know when I havn't had it. I think there is a general fear or perhaps negative judgenents about this class of drugs. When I joined this family there were folks who had their coffee no matter what. And it worked for them. That is the deal "if it works for you" Good luck Miriam Quote Link to comment Share on other sites More sharing options...
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