Pots ****

[nikigrl8883]

how is everyone doing today ? i am am just curious in here who knows whats causing there pots? or if most of you have no idea....its so frustrating not to know the reason and im one of those people in general who always wants to figure things out not just with me but just puzzling things in general...to me that has to be a clear cause for it for all of us this is no way to live, im sure you all agree...i dont know how any of you work unless your sitting down,,,,for me its really wierd becasue most pots people have low bp while standing mine is either normal or a little low but not that bad its the heart that gets really bad.....i just dont feel right more so while standing still or walking i get like sweats and lightheaded i sure dont ever feel normal so days are better than otehrs as you all know....is anyone like me in the sence that when they wake up and there laying in bed they actually feel normal again until they start walking around then the rest of the day even if im laying i still feel like crap does anyone else in here jsut have a fast heart rate while standing and somtimes sitting without the normal low bp standing

[Dizzy Dame]

I'm the same way when it comes to feeling normal when I wake up. I also feel normal whenever I'm laying down in general. Even though I've been sick for more than a year now, I still forget sometimes that I am sick if I've been laying down for a long time. I get up like a "normal" person, and then BAM, tachycardia, nausea, etc.

I also know the cause for my POTS. I have lyme disease. Hopefully you can find the cause for yours!

[Ernie]

Hi,

Most people don't know the etioogy of their POTS or NCS. There is still a lot to discover concerning dysautonomias.

[cardiactec]

yep, i am severely tachycardia (my rates without beta blocker are like 210).....i have normal blood pressure (it's like 115/70)..........my problem is mostly the tachy. i get a little light-headed every now and then, mostly short winded and sweaty, nauseous........

dont worry, i dont fit into any specific category yet either, just plain old POTS. no one knows with me the exact cause.....i always have thought that i'm a bizarre case cuz most people it seems with pots do so well with meds that increase their blood volume or/and blood pressure (i dont have a problem with either!) ....and usually those same people who respond well to pressor meds (to bump up the BP) dont have a good time with beta blockade therapy. i on the other hand respond extremely well to very high doses of beta and dont respond at all to the pressor/pressure bumper upper meds..........i've always questioned the diagnosis of pots because it seems like i am so different (symptom wise and med response wise) to most people i've talked with that have pots. i think like two people out of everyone in this forum sound similar in symptoms and med response/type of meds as me........................i guess it all depends on the underlying cause......

[nikigrl8883]

ya exactly! me too thats why im so nervous about the pots thing too i seem alittle differnt from what the other people are saying i mean i have alot of same symptoms but im like u

[India]

I have no idea what caused my POTS either. I do remember having symptoms like this for as long as I can remember, though they were never as severe as they suddenly got in my 20's. Without atenolol I have a very high resting heartrate and that makes my response to the drop in blood pressure even more alarming because my heart goes into overdrive trying to get my BP back up. The atenolol takes the edge off that but it also seems to be increasingly working to lower my BP! It's a vicious circle! Your heart rate might be high upon standing without the low BP because your heart is doing its job to keep your BP up--this is the way that my EP explained it to me, anyway.

My BP can be low standing, sitting, or lying down, although it is generally worse upon standing. One day I can feel relatively fine and dandy, and the next day--without any change in routine, eating habits, or stress--I can feel like the bottom has completely fallen out. I can feel crummy with or without a low BP, but I generally always feel crummy with a low BP.

It's very frustrating, I know, not to be able to pinpoint the cause of all of this disruption. But, as others have said, not being able to identify the cause is something a lot of us have in common. Perhaps it's not the sort of sister/brotherhood that you want to belong to, but at least you are not alone!

India

[jenwclark]

Niki,

I don't know the cause of my POTS, either. Like you, I have a really hard time with not knowing what's going on. When I have ups and downs, I wrack my brains trying to figure out why, because it just seems like there must be a reason. I'm working on learning to accept that I may never know, and that I need to relax about it and just take it as it comes. It's a tough lesson to learn.

Take care.

spike

[bttrflyamby1981]

I'm in the same boat. I don't have a dx period though. The only thing for sure is that I have the Tachycardia.

I'm on Toprol right now.....I have a feeling they are going to increase the dose. That's all they said they can do for me right now. They just don't know what's going on with me.

I can tell you that everyday life isn't a normal task for me. Just doing something as simple as bending to tie my kids shoe can make me feel awful. Being on the beta blocker has helped A LOT, but having answers would make it easier emotionally.

I too can still have an increase in my heart rate while sitting (without the beta blocker).

Take care and know your not alone,

Amber