Jump to content

Spring Break At Mayo Clinic!!!


Recommended Posts

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!! :P

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!!

Link to comment
Share on other sites

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.


Link to comment
Share on other sites


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. :o

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 . . .

Link to comment
Share on other sites

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!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...