ruby

Hi everyone.... I have a question about relapses. My daughter has been doing well on med for PTS (Florinef and Prozac) and last week was a total ball of energy, senior in high school, working at night etc. Then she got a mild cold, which resolved and now has been down for the count for 5 days. She looks just like she did when she first got sick. Listless, can't tolerate being upright for long etc. Her pulse and BP are low, but she still shoots up 30-40 beats when she stands. Anyway, her original onset was after a viral illness, and I am wondering if this might have something to do with her relapse. (I am in the medical biz myself.) So am wondering if the original onset was after a virus, maybe any viral illness might cause a relapse - as in - maybe there is an inappropriate auto-immune response... Does anyone have similar experiences or thoughts or research on this? It breaks my heart to see her down again. I guess my other question is how many of you with POTS have unexplained relapses - how often? Maybe this is just something we need to get used to?

Thanks so much.... I am in San Diego FYI.

Ruby

can someone please help. My neice have been told she has POTS, we live in toronto and no doctor up here has been able to help her. In the summer of 05 she went down to the mayo clinic in cleavland and was given the appropriate tests to determine what she had and it has come back that she has pots. But again no doctor has been able to decifer what this is or how to possibly treat it. We are at our wits end here and every day she is getting worse & worse, very sick girl. She is only 25 and it's really hard for me to see this happening, I feel that I need to do something.

I have found in the past that these kind of web sites, forums are so useful and great people with so much information and kindness are willing to help out others.

Can someone please explain to me what this condition is all about in plain terms and maybe share some suggestions or stories of help for us.

I really appreciate your kindness.

Maureen Evans

<{POST_SNAPBACK}>

Maureen....

MY first time on the forum and saw your note. My heart goes out to you. My daughter (17) was diagnosed with POTS last Spring...but not until I had done all the research myself and dragged articles to docs etc.  Up until the tilt-table test, I think they still didn't believe me - then she "failed" (passed out) in 4 minutes - the most dramatic case this cardiologist has ever seen. Anyway, my method was to print out articles and give them to the docs. There are excellent ones on the list here, and the website itself is very helpful. We tried a couple different meds, but she is now on florinef and prozac (the florinef increases risk for depression in young women)... and has gotten about 90% recovery of her normal life. This week she had a set back which I am going to post about. Anyway, if you need more support, write back... Hang in there...

Mayri (Ruby) in San Diego