Anyone With Neuro Cardiogenic Syncope? I Have Questions!

[AshleyPooh]

Hi all,

I'm pretty well versed in POTS now, but I don't hear much on here about NeuroCardiogenic Syncope. I saw one person who just was told they had it, but I realize that I'm not all that sure about the symptoms of it.

The reason I ask is b/c I thought my symptoms were POTS symptoms, b/c they were so ongoing and chronic. My blood pressure drops and stuff sound like Syncope though.

1) can NCS cause chronic symptoms, not just episodic symptoms? I feel tired from standing all the time, not just sometimes. I don't faint, but I get out of breath, have to sit down, can't tolerate heat and other things.

2) If you can have both POTS and NCS, would having both cause low blood pressure with drops and also faster heart rate? My hr doesn't go super high, just not normal.

Also if you have NCS, what kind of treatment are you on that you feel works for you? Not just to control fainting episodes but the chronic fatigue and intolerances that come with it?

[Chaos]

Hi Ashley, Hope your TTT goes well tomorrow/today. It should give you answers to most of these questions so you'll know for sure what you're dealing with. You can have both POTS and NCS.

I think if you think of Dysautonomia as the big "umbrella" term, then POTS and NCS are just variations under that umbrella. So you could have just one or the other and still have ongoing symptoms caused by the dysfunctioning autonomic nervous system that is causing either the POTS or the NCS, or both.

Personally, I've never fainted but have been diagnosed with both POTS and NCS (aka NMH).

Treatments are as individual as we all are.... but I think Florinef and Midodrine are frequently used for NCS/NMH, along with the salt loading and compression garments and high fluid intake.

Keep us posted on your results.

Hope you and your family are doing ok after all your trauma.

[Justin-in-MI]

I was diagnosed with NCS without POTS. I have chronic issues and plenty of them. I don't pass out standing like POTS but activity makes it difficult for my body to regulate my BP. So if I over exert myself (which is what used to be a normal day of activity) I start to get lightheaded. If I don't drink enough (80+oz) fluid every day I risk passing out. Lots of different triggers for passing out but not just from standing.

I can not tolerate heat either. I walk around in a T-shirt in winter in Michigan. Being in rooms with more than one person or around bright lights makes me feel awful. Can't go into grocery stores, restaurants, wal-mart ish stores. I get sensory overload.

The only treatment they have given me is to do things to keep my BP up. Drink a lot, sit if I feel lightheaded, compression stockings (which make me hot). Midodrine was the only drug. I don't like taking drugs so I stopped it.

Justin

[targs66]

I was diagnosed with neurally mediated hypotension. My understanding is that it's the same as NCS but the docs at Johns Hopkins called it NMH because not everyone actually faints (hence the "hypotension" rather than "syncope").

I've had what's been called chronic fatigue syndrome (or myalgic encephalomyelitis in the UK) for many years, which has become progressively worse. My biggest problem is the overwhelming, devasting fatigue that I feel all the time. My personal theory - and it's just a theory!! - is that my NMH is secondary to whatever is causing my chronic fatigue. In other words, I feel like the blood pressure issues are caused by whatever is making me ill enough to have chronic fatigue, and if the chronic fatigue was sorted, I feel like the blood pressure issues would be resolved. I especially feel that's true because there are times when I can feel so utterly incapacitated and rotten -- and my BP is a reasonable 94/65 or the like.

So while I do a few things to "look after" my low and fluctuating BP - keep hydrated, sit when necessary, consume lots of salt - it's not my biggest concern. Weirdly enough - I can tolerate the heat pretty well, but cold just devastates me. I've been visiting D.C. -- and as ridiculous as this sounds, the heat has felt good.

Hope you can find some answers! Keep us posted.