Is there a reason people typically only discuss POTS?

[ellieollieoollie]

Hello, I'm new here! Let me know of any social fumbles and I'll always work to improve. I'm autistic on top of having been homeschooled on top of this and that. So I don't know when I'm being rude or awkward, but I never would be on purpose! I hope to get to know everyone and make some friends here.

However, I've looked on multiple forums, but I almost only ever see people discussing POTS in particular. I have NCS. It presented about 4 years ago, got worse and worse, and finally leveled out to an even "I'm disabled now". But I don't see a lot of people with NCS discussing their condition. I just wonder why that is!

[Pistol]

Hello @ellieollieoollie Welcome to our forum! I too have ncs, on top of pots. I think the reason there are not a lot of posts specifically mentioning ncs is because we often just include everything in the term dysautonomia, since ncs and pots and oh etc are all related. But many here suffer from ncs and fainting, I do! 

How are you managing your episodes, and have you found any  treatments helpful? I too am disabled but my episodes are pretty controlled, thankfully, due to weekly infusions and medicines, plus the fact that I am home bound. I am very orthostatic intolerant, so I am not very active, which also helps with the episodes! 

I am happy you checked in, and there are many people here that know how you feel and what you are going through. You are not alone! Please feel free to reach out or to ask questions or post any information helpful to you! 

[Sarah Tee]

On this forum, you will find plenty of diversity, with people discussing various kinds of dysautonomia.

Do feel free to start posts asking about NCS.

I believe NCS goes under a few other names, and perhaps the categories aren’t very well defined yet, or might differ in how they are used between countries and different generations of doctors.

For example:

http://www.dysautonomiainternational.org/page.php?ID=26

So you might have to do a few different keyword searches to bring up older threads on this topic (or members will help track down useful threads for you).

I am not sure why there is so much content online about POTS. Are patient advocacy groups doing a great job getting it out there? Is research and the connection to Long COVID bringing it to public attention? Is it more underdiagnosed than some other conditions? I don’t know.

While it is good that POTS becomes more well known, it can backfire with people having similar symptoms that don’t turn out to be POTS and then either giving up on a diagnosis or being told by poorly informed doctors “You don’t meet the criteria for POTS so there’s nothing wrong”.

It took me ages to work out that POTS is just one type of orthostatic intolerance. It held back my diagnosis a bit, because I don’t have tachycardia, but I eventually found an article that mentioned the other kinds of dysautonkmia, realised I could have such a thing as “plain OI”, and got referred to a specialist.

Welcome to the forum and post away!

[RecipeForDisaster]

Another non-POTS-er here - I have dysautonomia and HYCH, plus autoimmune small fiber neuropathy and lots of other stuff. It can be called orthostatic intolerance, orthostatic hypotension, etc. I have a lot of labels, but POTS isn’t one of them. I would agree that the other stuff is slower to diagnose… but most of the treatment overlaps.

[MikeO]

I don't have POTS as well (maybe thought differently during last night's episode). I do agree with @RecipeForDisasteras most of the treatments for OI and OH overlap. 

[Sushi]

I also do not have POTS but rather NCS or neurally mediated hypotension. A lot of these categories cross over. I don’t actually pass out because I get enough warning in order to sit down – if I didn’t I would pass out. Yes, NCS is sometimes responsive to different treatments than POTS. You are not alone here!

[RecipeForDisaster]

4 hours ago, Sushi said:

I also do not have POTS but rather NCS or neurally mediated hypotension. A lot of these categories cross over. I don’t actually pass out because I get enough warning in order to sit down – if I didn’t I would pass out. Yes, NCS is sometimes responsive to different treatments than POTS. You are not alone here!

Me, too - if I listen to the warnings, which get "louder and louder", I don’t usually pass out. That makes me sound less sick than I am. I am frequently having to sit or abruptly lay down to avoid passing out. If I don’t, I’ll lose my vision, hearing, and ability to stand, usually in that order - though lately it’s been a nice surprise to see which one will go first. That normally happens in public or in other situations where I really don’t want to sit on the road, or something like that.

[Pistol]

I do have pots, but I also have ncs. Actually, my first TTT showed NCS, but not POTS. My second one was deemed normal but later was INterpreted clearly positive for pots by my autonomic specialist. Most POTS patients do not necessarily actually faint, but all ncs patients faint or almost faint, so often fainting points to NCS as well.