Help! Pregnant with POTS, PE's, multiple clots from bed rest

Hello all,
I have had POTS for 8 years now, and had my son 3 years ago with no complications - actually by the second trimester I felt better than I had in years and went off all meds.  Had an epidural and vaginal birth, recovered quickly, and have not been back on my beta blocker or florinef since.  Was taking 1 mg Klonopin (.5 2x daily) when I found out I was pregnant again, and immediately saw the OB and started coming off it.  
While decreasing the dose, my POTS sympotoms went bonkers. Within 10 days of finding out I was pregnant, I went from almost med free and very active, to being completely bed ridden with extreme dizziness, fatigue and weakness, increased tachycardia, and a new extra fun symptom - vertigo.  
I have now been in the hospital (been home a total of 6 days) since the first week of January, and am only 13 weeks pregnant, and am freaked out.  In late January a PICC line was put in so I could go home with fluids, but instead of home they sent me to a "rehab" nursing center (I have been unabvle to sit up or stand for more than 2 minutes woithout feeling like passing out, and the vertigo kept causing me to fall).  The nursing center failed to use heparin and flush the PICC line, and I developed 5 DVT's along the line, as well as a big fat clot in my jugular vein.  I went home for a day and then was sent back to the ER where they finally discovered the clots.  I was in the hospital for 8 days, all the while on fluids, and the pressure in my head, neck, and chest when standing kept getting worse.  They decided to keep the PICC line in and sent me home again, barely able to get mysef to the bathroom - I could not breath when I stood up.  Home for another two days, then the home health nurses sent me back beacuse my chest pain got worse. Turns out I had multiple pulonary embolisms in both lungs and a new clot on my heart.  The Lovanox (long acting Heparin) was not working, they have since found I need a really high dose to keep my blood thinned.
So....now I'm still in the hospital recovering from the PEs, still having major issues when I stand or sit up, there is insane pressure in my chest, my neck, and in my head when I sit up to far. I'm also excreting more fluids than I'm taking in, so they are discontinuing salt pills, they think it may be making the fluid situation worse.  The PICC line was removed, and I am running out of veins in my good arm, and they are going to try and ween me off fluids next week slowly and see how I do.
I have a decent EP (cardiologist), but he's only had a few other pregnant POTS patients.  My high risk OB docs are scratching their heads, but are willing to call Mayo to consult with the neurologists over there if I don't imrove.  There are no local neurolgists that will even see me, they have been looking (and I have been looking for years) and they wont even talk to me.  So if anyone has any ideas or suggestions, I'm feeling pretty overwhelmed and scared about everything.  I may feel better and retain more fluids in the 2nd trimester, but no one knows of course.  They are talking about trying florinef, but I'm freaked about how it will affect the baby.  My blood pressure has been stable as long as I'm pumped full of fluids, so that is good, but I'm really wondering why/what is cuasing my fluid retention issues.
Sorry this is so long....its been quite an ordeal!  Thanks in advance for any input!
Claire      

[Heiferly]

I would be lying if I said that the information that I have available to share with you with regard to pregnancy/labor and POTS is sufficient to address the situation in which you find yourself now.  Most of the available information addresses the particular concerns of women with POTS/dysautonomia and how labor and delivery should be approached in these women to minimize risks to both mother and child (I'm referring here to medical journal articles of which I'm aware).

If I were you, at this point, I would highly consider having your EP-cardio or high-risk OB consult with the autonomic neurologists at either Mayo (Rochester) or Cleveland Clinic (Ohio).  (I specify which branch of these hospitals because their satellite locations do not have the same caliber of autonomic clinics nor autonomic specialists as their main locations.)  Cleveland Clinic's syncope and autonomic clinic is housed at the #1 heart hospital in the entire nation and Dr. Fouad who heads up the autonomic neurology team there, is well-respected and renowned.  Mayo's autonomic clinic is of course also housed in one of the nation's top hospitals and their Dr. Low is one of the top autonomic specialists in the world.  (Although Vanderbilt stands alongside these two as one of the top three autonomic facilities in the country, likely one of the top five worldwide, I recommend Mayo and Cleveland Clinic more highly because they have top rankings in more specialties than Vanderbilt, implying they are higher-caliber facilities overall.  If it were my decision to make, in the situation you describe, those are the two from which I would be choosing.)

If anyone has information on fludrocortisone (or other POTS meds) during pregnancy, the autonomic neurologists there would be the ones.  I wish I could tell you more, but I've researched POTS/pregnancy thoroughly in the past for several others and am fairly confident that the information you're seeking is not to be found in journal publications (which is likely why your docs are scratching their heads).  If this is known, it is in the form of anecdotal information from the experience of these doctors and you're going to have to pick their brains to get to it.  :-/  You may even have to settle for *speculation* from an autonomic specialist if this turns out to be something they haven't had to deal with before, but speculation from someone who does autonomic day-in and day-out and is one of the top experts in the world on the subject is better than just stabbing in the dark I would think.

I hope you find some answers!  
And I hope you will keep us updated on how things are going for you.
Best,
-Heiferly.

[Claireification]

Thank  you!  My OB doc contacted Mayo about the situation, and they basically said some people improve in the second trimester, and some lucky ones (not!) do not and need to be on fluids the whole pregnancy.  I'm going to double check on the Florinef and what Mayo says.  They just cut my IV fluids in half to see how I do, I can already feel the increase in dizziness and my BP has droppped from the 120's/70's to the low 100's/low 50's.
Anyways, thanks again!  
Claire  

[Heiferly]

Although there's not much wisdom to be had here with regard to what to do with your particular situation, we do have a number of moms here who HAVE gone through POTS pregnancies and childbirths with a pretty wide spectrum of experiences.  You may want to start a new post and just put a wide shout-out to all the POTS-moms out there to ask about what their experiences have been as (as I'm sure you already realize) your experience can obviously vary from one pregnancy to another and maybe hearing from other POTS moms can give you an idea of the various ways things may go in more detail.  All my experience with kids is from working with them, not having any of my own ... and from BEFORE I came down with dysauto (my hats off to all the moms out there wrangling kids and symptoms at the same time ... oy!!).  So while I have info from the "textbook" side of things, I don't even try to profess real "knowledge."

Here's a start at what's been discussed here before:

http://www.medhelp.org/forums/search/266?query=pregnancy

You may be able to directly contact some of the women from those threads if you hover your cursor over their username in blue at the top of a post they made and then click on "send message" in the dropdown menu that pops up.  (A tip on that:  check the dates of what you're reading first.  If it's really old, the person who posted it may or may not still be around our community, so try for more recent posts first.  If you're going to reply to something directly in the thread where it is posted, we generally recommended sticking with things no more than 3 months old, 6 months if you want to push it.  Past that and things become rather outdated and we consider the thread to be "dead" and still there basically just for reference purposes at this point.)


As for whether you will improve in the second trimester, I hope you do.  If hypovolemia (or even just an effective thoracic hypovolemia due to severe pooling of blood in the dependent limbs) is a major component of your POTS—which it sounds to be considering your response to IV fluids—the increase in blood volume normally seen in pregnant women in the second trimester should be beneficial to you.  Unfortunately, this isn't one of the texts that I own personally, but from what I can see here it seems to give a pretty comprehensive overview of the cardiovascular changes attendant to the various stages of pregnancy:

http://books.google.com/books?id=UqDEKK4XzT4C&lpg=PA197&ots=PnLeEVwZ_J&dq=blood%20volume%20increase%20second%20trimester&pg=PA192#v=onepage&q=blood%20volume%20increase%20second%20trimester&f=false

(I hope that URL works for you; If you scroll down it should take you to the beginning of the section on the changes in blood volume and then through some other relevant material as well in this preview.  One interesting point it mentions is getting relief by lying on the left side in particular; obviously I have no idea whether this might be of help ... I'm guessing you've already tried everything at this point.)

One last thing I thought I would mention is that if your docs haven't tried you with Rx compression hosiery yet, that's something that might be worth a shot.  They make ones for pregnant women and it's a fairly common treatment (often used in conjunction with medication or other treatments) for POTS and other forms of orthostatic intolerance in dysautonomia.  I wear 40-50 mmHg custom-fitted thigh-high Rx compression hose from Mediven.  They are a bugger to get on and off (i.e. it takes TWO people ... me and someone less wimpy), but they do help.  If you want more info on those, I can point you in the direction of that.

Take care and keep in touch,
-Heiferly.

[LivingInHope]

" I'm also excreting more fluids than I'm taking in, so they are discontinuing salt pills, they think it may be making the fluid situation worse."

That conclusion makes no sense to me- excreting more than taking in and they discontinue the salt pills?  I don't get it.  Did they check your anti-diuretic hormone?