Pots- The Beginning And Where From There....?

[zoe ashcraft]

Hi all,

I have so many questions, I'll try to just ask a couple at a time.

First off, as I always had low blood pressure, super low blood pressure but was super athletic it was never a problem until after my heart surgery- and while looking back I can remember a lot of times my peers thinking I was drunk when I wasn't- (maybe that was POTS) - so maybe there were small signs of it- it was certainly never a problem.

The way I see it, (but don't understand it) is somehow the heart surgery itself, opening that whole upper body, taking out the heart, putting the whole breathing and heart functioning on machine reliance and the position of the neck during surgery, plus the inactivity, loss of muscle afterwards must somehow have been the precipitating factor for POTS to become a real problem for me. Does that make any sense ? Someone mentioned to me that it might have disturbed the vagus nerve-

I'm curious for many reasons, one of which is that one of my daughters just now beginning to have a few health problems has a BP of 58. She had a fainting episode this last year, but other than that seems healthy in regards to POTS issues- at least for now. Is POTS something that we can be prone to succumbing to later on in life - like ummm.. I can't think of a good example right now. But is it something that preventative care can ward off if we have the disposition for it- as young people?

I have no idea where to beging for treatment myself. I know one of the threads I read here mentioned Dr. Nazli ? with NIH I think EDS specialist as being real good understanding seizures and POTS, ect. I was supposed to be a part of the clinical trial in 08 for connective tissue studies but got lost in the paper work when they had a staff change- wrote them recently and haven't heard back.

My lame cardio told me there's no treatment for POTS. Well, needless to say that was the last straw with him. I knew already that he was pretty worthless and I need to find a new one. Dr. Francomano from Maryland recommended a saline infusion every two weeks for me but seeing as I live in CA - and haven't but just now found a good MD. none of my doctors have been willing to follow thru on recommendations fro specialists. Are saline infusions that effective? I had it done once by fluke and it made me feel gReat but it was done hand in hand with a caffeine infusion too for head pain, so hard to figure out.

Other than that I wear the waist high 20-30 compression stockings everyday. If I don't I have severe pain- which I know isn't what they're prescribed for, any idea how this figures in? They seem to help otherwise as well, just overall feeling of wellness and strength.

Sorry it's so long~ hAA! I tried....

from somewhere over the rainbow,

zoe

[janiedelite]

Hi Zoe,

You're right to look for a good POTS specialist because there are meds out there. You do really need someone knowledgeable about these meds and POTS. All of us have slightly different symptoms and reactions to meds which makes treating this illness complicated sometimes. Your doctor will need to take into account your heart history also.

Have you checked your daughter's heartrate lying and standing? Maybe try checking it first thing before she gets out of bed (that will give you a good idea of her resting heartrate), and then have her get up, get dressed, brush her teeth, whatever, and have her keep standing and check it again. The standing pulse shouldn't be over 20-30 points higher than the pulse lying down. If it is, it could be indicative of POTS.

I don't know how old your daughter is, but a systolic BP of 58 is pretty low.

Take care, Janie

[zoe ashcraft]

Hi Janie,

thanks for replying* My 'daughter' has sigh~just turned 18. So, the situation is sticky. She's an adult and also doesn't want to hear about My problems or the chance of her inheriting any of them for Sure. I've thought about calling her doctor and seeing if he'd test her on the sly for me, but she is an adult so I'm sure he wouldn't! ARgh. Ah, well- maybe I can 'use' her older sister on this... older sister (24) has EDS and was tested for POTS- they say she didn't have it but I don't think we're real clear on whether the person doing it was knowledgeable or not!

A friend of mine with medical training said that if my 18 year old had been sitting there for a while talking to the doctor and then he took her pulse- it wouldn't really be a true pulse rate and that that's why they generally take your pulse first thing when you get in the doctor's office. (this was news to me~) She said that if the first scenario had been the case, then it would probably be within norm. for an athlete and daughter of 2 families with low BP tendencies. But you're right, the real POTS testing is what I would like to see done.