POTS and Pregnancy

[junbug52704]

I was wondering if anyone has delt with POTS while pregnant. I am now 21 weeks, the symptoms have started a very long time ago, but I have been misdiagnosed with this or that for years. The doctors are thinking the stress I went thru just before my wedding actual made this episode start and that the pregnancy is just really aggravating it. I had to fight to get a doctor to realize something was wrong. But when I finally found a great doctor he figured it out in a few minutes, I guess because the right symptoms presented at the right time (orthostatic, sinus tachycardia, veniuos pooling, syncope, dizziness, lightheaded, tremousleness, vision issues,stomach issues...etc) But other thatn the research I can find I can not get any info on this during pregnancy. My doctors have only treated 2 people with POTS, so needless to say I feel like somewhat of a lab rat to them. Needless to say this is not a situatio I wish to be a lab rat, all though happy to have a name for what is wrong with me. I was wondering if any one had any info about pregnancy and POTs. They currently have me on Metaprolol very low dose, which isn't doing anything but causing more issues, but are scared to do much of anything to me. Any ideas would help sooth my mind.

[Asher812]

Hi all.  Just to let you all know, I have had POTS for 18 years.  I had my first child on 7-707 at age 31.  My first trimester was a nightmare.  I could hardly stand up.  Second trimester was better. Third, I was put on bed rest.  I was chronically fatigued, and dizzy all the time.  I did take Midodrine throughout the entire pregnancy and my baby boy was fine. I actually had an OBGYN that has worked with 14 other POTS patients during pregnancy.  I was very fortunate.  I had to have an utlrasound every month until the third trimester and then once a week.  My doctor is very educated on this subject even though there is not much about this on the internet.  I guess I am just saying that doctors are out there.  They are just rare to find.  We are not alone in this.

[twowishes]

Wow, Sailbritt, it's funny but I also have POTS *and* am also due on March 23!!!  I've had pre-term labor issues, though, and anyway will probably schedule a C-section to go easy on my system, so the chances of our making it to that date are rather slim.

So far I've been seen almost entirely by a regular OB who doesn't care about the POTS in the least.  (I'm actually not sure she really knows what it is.)  As long as the pregnancy was normal, that was fine, but now that I'm having problems I'm determined (even at the late date of 28 weeks) to switch to the high-risk doc I should have been using from the start.  I did have one consult early on with the high-risk doc (maternal-fetal medicine doc, or perinatologist), but her approach was that in the absence of pregnancy problems before that point, there was no reason to assume that problems would eventually develop.  In other words, we should treat it as a healthy pregnancy unless some new development made it otherwise.  I'm not on any POTS drugs, but her one other POTS patient was on midodrine throughout and I believe had a healthy pregnancy and healthy baby.  

Because POTS can affect one's reaction to anesthesia, my doc did recommend that I consult in advance with an anesthesiologist, who can make any special plans in advance and keep them in my file for whomever's on call at the actual delivery.

In terms of experience, I was destroyed by exhaustion during the 1st trimester but felt much, much better during the 2nd once the added blood flow kicked in.  The 3rd has been rough so far -- I feel exhausted and generally rotten much of the time -- but I suspect some of that may be due to the calcium channel blockers I'm taking to keep labor at bay.  Despite my fatigue and the pre-term labor, the baby herself has been extremely healthy in every measurement.  

Good luck, all.  Hope it goes well for you!

[Heiferly]

I found this article linked on DINET.  

Pregnancy in postural orthostatic tachycardia syndrome. Glatter KA, Tuteja D, Chiamvimonvat N, Hamdan M, Park JK. Pacing Clin Electrophysiol. 2005 Jun;28(6):591-3.

You can get it through pubmed and probably have to buy it, or get it through a medical library.  But I imagine it is worth it if you are having a POTS pregnancy.  Good luck!

[sailbritt]

Hi,

I was diagnosed with POTS April 2007 and have felt like you, like a lab rat every step of the way.  I live in the Cleveland area and luckily have an "expert" at the Cleveland Clinic, but she by no means has all the answers.  I am now 27 years old and 27 weeks pregnant, due March 23rd.  OBGYN also has only seen maybe 1 or 2 patients with pots but none while they were pregnant...so again I feel like lab rat.  I am on no medication.  I saw a high risk specialist and she said a low dose beta blocker is safe while pregnant but I chose to try it without one.  I have read a lot about POTS patients getting c-sections, but this high risk specialist said I should be fine with a vaginal birth as long as they don't let me "push" for a very long time.  They want me hooked up to a telemetry unit and want me to get my epidural early and allow me to drink as much water as a want.  Every doctor has a different opinion and it is very frustrating when you are the patient and just want a solid answer.....which I really haven't gotten since I was diagnosed with POTS in 2007.  If you have any information I would GREATLY appreciate it.

***@****

[hrh_hjh]

I have had POTS for years, but was only diagnosed 3 years after the birth of my second child.  I was ridiculously exhausted during both pregnancies, pretty much the whole way through, and my blood pressure was always surprisingly low (of course I know now why, but no-one did at the time).

Both deliveries were "uneventful", to use the medical phrase.  I had both naturally; the second with no pain relief at all, and had minimal tearing.  Of course had I been diagnosed I'm sure my delivery would have been much more closely monitored, but in retrospect I"m glad they weren't.  I really struggled with the first few weeks / months postpartum with the extreme fatigue, but I coped.  

I have just discovered I am pregnant for the third time.  This was not planned, though we'd dreamed of a third child.  I'm currently taking Midodrine for my POTS, which helps a lot but does not relieve the symptoms by any means.  I'm getting mixed messages about the risk of taking Midodrine during pregnancy, though the general line is it's best avoided if at all possible.  I've got other (related) health problems and am now in the horrible position of trying to judge whether I can  managed a third pregnancy and child given my condition.

None of that helps you, of course, but I just wanted to assure you that a 'normal' and 'uneventful' delivery with POTS in possible.  Just hang on in there - it'll be worth it in the end.

[peach76]

Hi.  I have had POTS/OI  which was diagnosed in 1998.  I delivered my first baby this year in June.  Unfortunately information in the medical literautre regarding POTS/OI in pregnancy is very limited.  My experience was that my symptoms became much worse during the pregnancy with frequent blood pressure readings that were below the readable level.  I recently met another POTS/OI patient who had a similar experience.  I made the decision not to take medication and just put up with the symptoms due to a lack of info concerning the safety of OI/POTs meds in pregnancy.  However this was a personal choice and depending on the advice of your doctor I believe it would be reasonable to take medication if you are disabled by your conditions as long as you are aware of a potential risk.  

Amazingly, my OI symptoms became much better immediately following my son's delivery, and since his birth have not been much of a problem.

Something to discuss with your OBGYN is the potential for hypotension if you have an epidural.  I did have an epidural and warned my anaethetist who went light on it.  It did cause me to hypotense however and ultimately my baby was born with forceps as he became distressed.   Whether this was a result of the low blood pressure in the labour we don't know.  

All the best with your pregnancy and post delivery.

Danielle