NCS help!

[Loon33]

Hi.  I am a 33 year old female and was diagnosed with Neurocardiogenic Syncope last year.  The last few months have been extremely hard for me.  I do not know anyone else with this particular condition but could really use some advice and/ or support!  I had a tilt table last year which is what diagnosed me after having a 30 day holter on which showed 'abnormal heart beats'.  I was also feeling very dizzy/ light-headed, especially while driving.  Well, after being put on Toprol XL and Florinef, I was feeling better.. up until about 3 months ago.  I then was suffering daily with A LOT of light-headness, heart palpitations, sweats, etc.  I was also put on Midodrine and Lexapro.  After being on Paxil for 10 years for panic disorder, my cardiologist thought Lexapro may help (not to mention it's one of the drugs for NCS).  So, I'm now on the 4 medications used for treatment.  Still to no avail!  I am now scheduled to see a Neurologist that specializes in NCS for more answers.  In my daily life, I do have MUCH stress and/ or anxiety, which I know is a trigger.  I'm finding myself having crying spells because I don't know what to do!  I am not driving much at all anymore because of the fear of passing out at the wheel (and having my two young sons in the vehicle).  If there is anyone out there dealing with the same thing or who has been diagnosed with NCS, PLEASE contact me.  It would be great to find someone to talk to- even if online!  Thanks so much.

[Loon33]

Thanks.  I've actually been given the www.ndrf.org site already, and it's great!  I've also found a group with 'yahoo' just for people with NCS-- that one, too is wonderful.  I have 'chatted' with SO many people in the past 3 days that understand exactly what I'm going through.  It makes things so much easier to know there are others out there 'like me'.  What is POTS exactly?  I see it a lot on people's forums, as well as other 'disorders'.  I pretty much only know of NCS, since that's what I have!  Thanks again for your response.

[fwilson]

Hello,

I too have a form of dysautonomia (which includes NCS), and I know it is terrible to try and live with.

Might I suggest you try one if the following websites?  Each has a bulletin board with good folks having similar issues to you on a daily basis.

www.ndrf.org
www.potsplace.com

Good luck