Had another tilt Test today..new dx

[tonyad]

Hi friends,

    I had my 2nd Tilt Table done today (it was teriible!) because of continuing to pass out and changed dx from IST to
Neurocardiogenic Syncope.  OK Friends, even though I have been looking this up on internet,
I could sure use some input and info on this.  Who has dx of NCS? what can you share w/ me?

   I knew all along that the first dx of IST was NOT right all along. I tried to tell electro doc that but he has a God complex. You know the ones!!!

Thanks,
~Tonya

[Mom2four85]

I started out with BP 126/79 HR 77;  after 20 min BP 129/87 HR 101 - I was thinking ok I'm going to pass this with flying colors; just alittle tachy going on.  Then she said ok I'm going to give you 1 squirt of this nitro and if you don't pass out, you can get it 4 more times.  I got confident because my FIL, who's 78 had 5 full shots and never passed out even though he had just passed out a few hours before at home.

well by minute #4,  I had a syncopal event with no palpable pulse and my BP 97/48 HR 78 when they put me back down; after that I was in a wheelchair for 4 days not even allowed to get up to go to the bathroom by myself and the nurse said they never had a patient drop like that with no pulse from the test.

Dysautonomia is basically a dysfunction of the autonomic nervous system.   I'm still trying to understand it all, but this is what I've been told - think of an umbrella - Dysautonomia is the top and all of these things are under it, does that make sense? sometimes they overlap and sometimes they're a symptom or effect of another problem.

Below is a very good article explaining ANS problems from NDRF; they have a ton of useful easy to understand information on their site  http://www.ndrf.org/  it's a ton of reading though.
http://www.ndrf.org/NDRF%20Patient%20Handbook/SecA_pp17-58.PDF

[tonyad]

  I too thought they were going to have to "Zap" me?  Very scary stuff!
They said my B/P dropped to upper 50's over upper 30's and my heart rate was around 40.
Funny thing is when the test started (when they first sat me up right), my hR went from 70's straight up to 140's w/in about a minute. Hovered in the upper 140's then go to the 160's then back down to whatever whatever.  

   Then all of a sudden it ws "Lights Out"!  I hate that feeling!  
Anyhow thanks for the info you gave me. now is this considered an Autonomic Dysfunction?

~Tonya

[Mom2four85]

Tonya; sorry you had a terrible TTT but I know what you mean - I had a horrible one also passed out bp/hr tanked; thought they were going to have to zap me :p but luckily when they lowered me I came to after a bit

I have NCS/OI plus heart related stuff where I pass out my heart stops.  I had to have a pacemaker/icd implanted and still passed out until they fixed my settings to pace me at a higher rate, even still I get to that "black out" point that I think OH NO here I go again, but thankfully no full syncope yet since Jan 15th!

I've fainted since I was 9 and been told by many doctors it was no big deal unless it was on a daily basis, until my cardiologist told me last July  that it wasn't ok and pointed to something going on in my nervous system.

The way they've told me to manage mine is this - FLUIDS, salt intake - my dr suggested 7-10g daily which is crazy but I've read this alot; [oh no brain fog here sorry] compression hose; massage; tilt training; exercise if tolerated and a bunch of other things that my brain just can't come up with, I'll have to post later or you can search up top in the tips section there's alot of great info.

oh I did remember this, keep track of your symptoms and see if you can find what triggers yours - then avoid them :)