Dr Appt, Does This Happen To You?

[runningshoe]

Hi

I am having weekly bp and hr checks at the Cardio (I think they call it checking my posturals) because I was feeling funky and regular 6 month check up had my bp dropping when I stand. Today during the standing portion (5-6 minutes?) my legs started to feel wierd, I wanted to lie down, grab something to hold, etc, (the usual if I ever allow myself to stand still) but my bp didn't drop, it went up from my sitting bp. My hr went up 20 points. ( With florinef and betablockers it shouldn't move much more.) I am rambling but my question is - I felt quite symptomatic even though my bp and hr weren't typcial pots. Do any of you experience symptoms when you numbers aren't looking so bad? I feel like my pots is constantly changing and old symptoms calm down and then new ones pop up. A 15 minute check in the dr office is just that - 15 minutes out of a day when I can feel so many different things....Just checking to see if anyone else is as confused as I am!! I feel like a puzzle, the pieces are in place but someone is about to turn on the ceiling fan.....UGH!

thanks,

Lina

[flop]

Hi Lina,

I think a lot of us have experienced this - symptoms not fitting out numbers at the time. I know I can feel dreadful when my BP is normal or only slightly low.

I've recently spoken to a POTS doctor who thinks that POTS patients are more aware of our bodies, we notice subtle changes that other people wouldn't pick up on. The doctor thinks this contributes to why we often feel rotten with no obvious reason.

Hope you're feeling less funky soon,

Flop

[morgan617]

All the time. Even though I am on meds, I think my body fights them and the meds may hold down my pressure and pulse, but my autonomic system doesn't seem to pick up on that....morgan

[ellen]

Yes Lina, I think we all have this experience. Maybe that's why it's been so hard for us to get a diagnosis. I just picked up my Holter ECG Report from my cardiac EP, and (not surprisingly) it was normal. Next week he will give me a tilt table test. I have mixed feelings: if I get symptomatic, it might trigger a crisis, or ...if I don't, he might think I'm fine and not treat me at all. Which is worse? :lol:

Then again, it might go fine and give just the right information needed to treat my symptoms. I will let you know.

[mkoven]

i just saw an ans doc who said that bp from an arm reading may not reflect bp in the brain--so your numbers don't necessarily tell you about how much blood is getting to your head...

[dsdmom]

Flop,

I am curious about what your doctor said about us being more aware of our bodies. I've wondered about that - but the question is - WHY? Did you doctor have any reasoning behind it?

[flop]

Sorry - no reason given, I think it is still a work in progress project.

[Megan]

I definitely experience this! So frustrating and so confusing! (good to hear that I'm not alone in it, though) My mom constantly tells me that after all I've been through with POTS so far, nothing should surprise me. "I feel like my pots is constantly changing and old symptoms calm down and then new ones pop up." I was definitely having a conversation like this the other day. This is one of my biggest frustrations...I guess we all just have to deal with it since so much is unknown about POTS.

Also, I find it interesting about us being more aware of our bodies...it does kind of make sense to me, though.

Meg

[ajw4790]

Hi!

Even with the meds you can still have many symptoms. The meds will work to keep HR and BP from overreacting too much or less, but the overall issue can still be there and leave you with the symptoms (hopefully at a lesser level then before treatment). So, you can have the symptoms with less of a obvious BP/HR reaction (They are still working hard to even everything out).

Also, I think for many of us our POTS symptoms can change over time, as ourselves age/change, and our lifestyles change. Also, we tend to take meds for our "worst" symptoms, so with luck those diminish, but the "lesser" ones are still there, so our symptoms change. Also, with some meds you have to take in account they can be exacerbating some previous symptoms or causing new ones due to side effects.

Also, for some of us it is a progression, and things start out one way, and then go on to involve other things. Especially if you may not have "full blown POTS" yet.

So, I do see things change drastically over time. There are just so many variables... hormones, time of year, environment, stress, diet, meds, exercise etc...

Good Luck!

[Mrs. Burschman]

Lina,

I was back on Paxil when I had my TTT. My pulse went up 34 bpm. I know it would have been a lot worse if I hadn't been taking the Paxil.

I'm with AJW on this one. It seems like the medication helps control it, but it doesn't take it away. So your description sounds perfectly normal for a POTSy person!

Amy