shannon Posted March 21, 2006 Report Share Posted March 21, 2006 Well, I thought I'd give you all a report back from my trip to Mayo Clinic.... Lately, my main problem has been with nausea and keeping food down. Dr. Low thinks that my med Topamax may be causing a lot of that, so told me to stop taking it. I've been on topamax for four years (for migrains), so it is kind of scary to go off of it!! I think it is a good idea though. Then he wants me to try inderal.... when I was about 16, I was on inderal and my BP dropped so low that I couldn't get out of bed. So I'm a little nervous to go on that, but Dr. Low thinks that my BP will stay normal now that I'm taking mestinon with the inderal. I'm keeping my fingers crossed!! I also entered a 2 year long research program at Mayo Clinic. They are doing a study to determine causes of POTS. They also want to identify different symptoms among POTS patience so that when someone first presents with symptoms, the doctor will have a better guess of where the disorder is heading. Every 6 months I have to mail in a questionairre, and once a year I have to go in for testing. It won't interfere in my treatment at all. If any of you are interested in more information, you can PM me. If I learn anything more about the study, I'll let you know!! Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 21, 2006 Report Share Posted March 21, 2006 Hi Shannon,I noticed that you are also in MN. I was recently diagnosed with POTS, but have had problems for over 15 years off and on. Have you ever gone to the U of M for treatment or diagnosis?Did you think that the Mayo did a good job helping you with your illness? I have been to Mayo 2 times in the past, and they misssed the POTS, so I am a little afraid to go back. Thank you for the update on the Mayo research. I may give them a call. Rhonda Quote Link to comment Share on other sites More sharing options...
Be Still Posted March 21, 2006 Report Share Posted March 21, 2006 Shannon,I hope your stay at Mayo results in some improvements with your sx. I hope you also have a little fun before you go back to your studies. Best wishes at school!On behalf of the POTS community, thank you for participating in the research study. I think it would be good to have a diverse group for the study, with some old timers (some who have been treated for years and some who have not), but it will likely be limited to those who can travel (and who can afford it!) It would be nice to be able to have a bigger pool of patients to research. In a perfect world . . . Quote Link to comment Share on other sites More sharing options...
worththewords Posted March 21, 2006 Report Share Posted March 21, 2006 I'd really like to participate in this. I was diagnosed with POTS at Mayo in MN but I didn't see Dr. Low. He was the doctor who did read my autonomic tests though. I wonder if I would be eligible. Does anyone have contact for Dr. Low's office? Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted March 21, 2006 Report Share Posted March 21, 2006 Thanks for participating. I hope it was worth your time. I hope stopping the Topamax helps. I keep my fingers crossed for you.Dayna Quote Link to comment Share on other sites More sharing options...
shannon Posted March 22, 2006 Author Report Share Posted March 22, 2006 Indeed, I am very lucky to have Mayo Clinic right in MN. It does make the travel more affordable!! For those of you who may be able to participate in the study, Mayo's department of neurology can be contacted at 507-538-1037. Inform them that you are diagnosed with POTS and are interested in being a research participant with Dr. Low. It's worth a shot! Quote Link to comment Share on other sites More sharing options...
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