Ncs And Pots

[prettyinpink]

So three years ago I was diagnosed with NCS. I did the tilt table test-they tilted me up and I was fine then they put adrenaline in my IV which caused my HR to increase and subsequently I passed out. Five weeks ago I developed and was diagnosed with POTS. Dr.grubb said it was probably POTS all along. Now I would pass out as soon as they tilted the table up and i wouldn't need adrenaline to raise my heart rate. So how can the NCS have been POTS if the symptoms were different and the treatment too. If you have POTS and pass out does that mean you have POTS and NCS? If not then whats the difference between having POTS and passing out and having POTS and NCS?

[juliegee]

So three years ago I was diagnosed with NCS. I did the tilt table test-they tilted me up and I was fine then they put adrenaline in my IV which caused my HR to increase and subsequently I passed out. Five weeks ago I developed and was diagnosed with POTS. Dr.grubb said it was probably POTS all along. Now I would pass out as soon as they tilted the table up and i wouldn't need adrenaline to raise my heart rate. So how can the NCS have been POTS if the symptoms were different and the treatment too. If you have POTS and pass out does that mean you have POTS and NCS? If not then whats the difference between having POTS and passing out and having POTS and NCS?

I'll try to answer your questions. POTS is when your HR increases 28-30 BPM when you are upright. NCS is when you have a substantial decrease in BP after standing. MANY folks have both. One thing they can have in common is low blood volume. When there's not enough blood in your body, it has trouble traveling to your head, so the heart beats faster (POTS) to maintain your BP and get blood to your head. When that effort proves futile, your BP drops (NCS), you faint, and when you are supine- you finally have enough blood to your head.

A cardiologist at Hopkins helped us understand it by describing my son's body as a Coke bottle that was only half full. The only way to get Coke/blood to the top of the bottle was to lie the bottle on it's side.

Treatment for both conditions is often pretty similar. The major difference I can think of is the use of beta blockers in POTS, but not in NCS. Treatment for both conditions usually starts with extra fluid and salt. If that's not sufficient, then other meds are slowly added.

What have you tried so far? Is it working?

All the best-

Julie

[pat57]

I have NCS and was told it is BOTH decreased HR and BP, it does not appear that your HR dropped. Neither my BP or HR go up.

[juliegee]

I have NCS and was told it is BOTH decreased HR and BP, it does not appear that your HR dropped. Neither my BP or HR go up.

I hope I'm not confusing you here.....But, yes, Pat is absolutely correct. In NCS the BP and HR ultimately drop. But in many cases, patients first experience a high HR in an attempt to stabilize BP. If that increase in HR is in the 1st ten mins. of standing the patient is DXed with both POTS and NCS. During my son's TTT, his HR surges from 70 supine to 140 standing but later in the test, around 25 mins. His BP didn't totally drop out till 35 mins.

Pat, did you get a read-out of your complete TTT? I'd be curious to see if both your HR and BP dropped without an increased HR at some point.

[prettyinpink]

thanks for the info. But in POTS your HR usually continues to increase when you're standing it doesn't usually decrease even after half an hour so how can someone have both? They did a 35 minute ttt? I'm surprised they kept at it so long. If you have just NCS do you dont have the other autonomic problems like hot flashes?(i didn't until i develop POTS so i'm just wondering what's typical) I think Dr.Grubb told me with NCS you are fine between episodes unlike POTS which is constant. Is that what you'd say pat57?

[MightyMouse]

I have both POTS and NCS.

Here's the bottom line for me--my body cannot pump out an unending amount of catecholamines to keep my heart rate up and eventually, the "well runs dry", my heart rate slows to what would be normal for most folks, but at that point, my bp is low and I become unconscious if I don't lie flat.

You will probably want to start reading the links within the pinned topic at the top of the forum called "frequently asked questions: help yourself..."

Nina

[juliegee]

thanks for the info. But in POTS your HR usually continues to increase when you're standing it doesn't usually decrease even after half an hour so how can someone have both? They did a 35 minute ttt? I'm surprised they kept at it so long. If you have just NCS do you dont have the other autonomic problems like hot flashes?(i didn't until i develop POTS so i'm just wondering what's typical) I think Dr.Grubb told me with NCS you are fine between episodes unlike POTS which is constant. Is that what you'd say pat57?

Sorry to jump in again , I DO want to hear Pat's experience too. BUT, my son has NCS (not POTS) and he is not fine between episodes. He is also DXed with chronic fatigue syndrome (huge overlap with NCS) and has major dysmotility GI issues. There is a class of folks with vasovagal syndrome (VVS), which is used interchangeably with neurocardiogenic syndrome (NCS) and neurally mediated hypotension (NMH), that are OK between faints. But to say that ALL NCS patients are fine between episodes- is most certainly not correct as I'm sure many here will attest to

In POTS, it is my understanding that after you are supine (lying down) your HR will usually decrease fairly quickly. If yours isn't, hmmmmmmm.... And, we were told at Hopkins that a TTT lasts 45 minutes. If the patient hasn't experienced an episode at THAT time, an injection of medication to precipitate symptoms is given and then the test runs another 45 minutes if the patient still hasn't fainted. Sounds like your hospital used a different protocol. Wonder what would have happened had they used Hopkins protocol?

Keep asking question. I've learned oodles here

Julie

[peppermint patty]

Sorry to jump in again , I DO want to hear Pat's experience too. BUT, my son has NCS (not POTS) and he is not fine between episodes. He is also DXed with chronic fatigue syndrome (huge overlap with NCS) and has major dysmotility GI issues.

I have recently been diagnosed with NCS and I definitely am not fine between episodes. I am chronically fatigued (not officially diagnosed). After work I usually come home and collapse. I don't do a thing on the weekend, except rest to get ready for the next week. Actually, I am contacting my doctor tomorrow, because the fatigue is constant. I want to thank everyone for sharing and helping.-----Pat

[pat57]

Hi,

My HR , increases 8-10 points @ 1 minute, stays basically constant until the nitro. But did increase as a result of the nitro, which is normal. @ 2-3 minutes after the nitro it was in the low 40's. The B/p 2-3 minutes after nitro, is written as

82/50

blank

0/P

52/P

I had 4 TTTs. I have orthostatic hypo tension also. I was basically disabled until I was put on Norpace and I really do know know what well feels like.

I function great. I manually control my BP. Which basically means I never stop moving and I wear compression stockings. When not doing so I feel

heavy and weak.

I keep coming in here to clarify or add, but thought I should also mention that my B/P and H/R increase when I lay down. That is during the TTT

it does.

[MightyMouse]

Oh, and I'm not fine between episodes either. Daily, I have exhaustion, dizziness, sweating, nausea, GI motility problems, etc...

[pat57]

I think the POTS faint is because the heart is beating to fast to fill properly so its not circulating enough blood. And the NCS heart is beating too slow

at the time of faint.

[Mrs. Burschman]

And, we were told at Hopkins that a TTT lasts 45 minutes. If the patient hasn't experienced an episode at THAT time, an injection of medication to precipitate symptoms is given and then the test runs another 45 minutes if the patient still hasn't fainted. Sounds like your hospital used a different protocol. Wonder what would have happened had they used Hopkins protocol?

Keep asking question. I've learned oodles here

Julie

UGH! That sounds HORRIBLE! I don't remember exactly how long my TTT was, and they didn't do the injection, but I know for sure it wasn't that long!

Amy