Episode On Dysautonomia On Right Now

[MightyMouse]

Ntsae-On discovery health channel right now on east coast

[toddm1960]

It's too bad the focus on POTS is the orthostatic hypotensive group, that form has little to do with what I go through. There was a post on a few weeks ago to see how many fainters were on this forum and I was surprised it's the minority (from that poll). If you didn't vote on that post go back and fill it in, I'd like to know if those symptoms really fit most of us.

[MightyMouse]

Actually, while the show focuses on the hypotension part of things, really Linda has more going on than that. She has the norepinephrine transporter gene defect; they also really didn't talk much about the long term issues for her including the pacemaker she needs b/c of the ablation that she was given b/c of the inaccurate diagnoses that occurred before she finally got the right diagnosis.

I happen to be one of the people who has hypotension, but I also have hypertension too at times. I have rapid heart rate, and then normalization of heart rate, but that usually happens around the same time my bp is dropping like a rock, so that's when I end up with syncope or near-syncope if I get enough advance symptoms of nausea, shaking, spinning, etc.

nina

[toddm1960]

Anyone that missed it can find the episode on youtube, any information out in the media is a good thing for all of us.

[lrcaraway]

Anyone that missed it can find the episode on youtube, any information out in the media is a good thing for all of us.

Hello everybody! Newbie's first post. I just watched the episode on youtube and her initial symptoms seem a lot like mine. Except mine just started about a year ago. I was curious if anybody knew how she is doing now. The show kind of glossed over that part.

[MightyMouse]

As far as I know, she's hanging in there. She's the director of another organization called NDRF (National Dysautonomia Research Foundation). While we work for different organization, we have a good working relationship. Their website has a good reference book that's available as free, chapter by chapter downloads, which we cross link to in the "help yourself" pinned topic.

http://www.ndrf.org/NDRFHandbook.htm

Actually, Michelle Sawicki and I met for the first time, face to face, at NDRF's conference in Washington DC( back in 2002, I think?). We already knew each other from the NDRF forum (which isn't functional at present).

Also, since Txgirl, you're new, you may want to take a look at the DINET video. There is a clip on the main site opening page, and the full DVD is available for order if it's something you want to keep or share with others (not trying to sell it to you--just offering options since you noted you're new).

Nina

[lrcaraway]

Thanks Mighty Mouse! I have been to that website and read the handbook. I am thinking about printing it out for some of my family members. I was wondering about the forum over there. I tried to sign up but I noticed that it isn't working right now. Is that a temporary thing or have they decided to stop it all together?

[MightyMouse]

The forum has been down for several months. I've not heard any news on whether or not they plan to put it back online again--I know from experience here that it's a lot of work if you're going to have a moderated forum. Theirs was not moderated, but as I recall, the Smiths had to still do some moderating b/c of issues between and among members and then the forum closed. Perhaps it will be put back online again sometime, but I don't know. You could write and ask them using the "contact us" form they have on their site.

Nina