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.

[Heiferly]

Have you tried the compression hose?  With a Rx from your doctor, insurance will pay for them (medicaid paid for 3 pairs for me--your doc just has to talk to the medical supply store to make sure the right thing is written on the rx for the insurance to cover it).  They are fairly common for people with POTS to be told to wear daily, and actually when I was at the medical supply store they said sometimes pregnant women have to wear them.  They make ones especially for pregnant women with extra room at the waist.  I will admit they are hot to wear and difficult to get on/off but considering your medication options may be limited by being pregnant, compression hose might really be a good choice for you.  

[Heiferly]

I looked at the two most common medications for POTS and neither have been tested/approved for pregnancy.  The other non-pharmaceutical thing I know of is increasing salt and water intake to increase your hydration.  When you combine that with the compression hose, it can help keep your hydration up AND keep the fluids from pooling in your feet.  So maybe ask your doctor about whether it would be advisable to increase your salt/water intake and if so, by how much?  The trick is you'd really have to monitor it closely because too much salt would cause high blood pressure.  Mine runs low all the time, but I know for some people even with POTS they can run high sometimes.  Still, it's worth asking your doctor about to see what they say.  I drink zero-calorie electrolyte beverages to boost my hydration throughout the day.  

I hope you can figure something out.  Are you seeing a cardiologist?  Cardiologists at major research university hospitals would be the ones most likely to have treated cases of POTS/vasovagal syncope/IST before (they're treated similarly) I think.  

[homebody0907]

I was pregnant twice with autonomic dysfunction. The most important thing to do is work very closely with your OB and the doctor who DX your condition. Get lots of rest, and be sure to track all symptoms and anything that bothers you. Report this information to both doctors, and let the doctors share your information with eachother, you'll have to sign some medical realese forms. The pregnancy and and stress will make the disorder seem worse. Hang in there and be open about what is going on with your body. Don't try anything without docs approval. I've been there, I know what you're feeling. Keep it up, that baby will make it all better.

[junbug52704]

Thank you all for your responses, it helps just to know I am not the only one. I have transferred my care to a teaching hospital (so you get to say the same things over and over again) in the area so at times I feel like a lab rat. No one seems to know what to do, except watch and see. It is very unerving to me. I am hoping it will all get better, but each day it gets a little worse. I have been trying the compression hose, and the fluid intake, they tell me to keep upping it and I keep trying to explain that I already am "floating down river". I asked about the salt but since my blood pressure isn't stable " it goes up and down" they said hold off. The meds I am on worry me (not metaprolol 50mg), as the do affect the kid but with out them I find it hard to function at all. I think the worst part for me is going from being so independent to having to realy on people for alot of help with basic daily things. But again thank you for all your responses. At this point I am just waiting paitently to see my new sons beutiful little face. Has anyone delivered normally (without a cescerean)?

[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

[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.

[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.

***@****

[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!

[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!

[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.

[llynmyhrt29]

I think it really does depend on how badly your POTS affects you on a day-to-day basis. I am like you, also feeling like a lab rat. I'm still in first trimester, and am seeing an OB, Perinatologist (high-risk OB), and cardiologist. Neither the OB or highrisk OB know anything about POTS which is disconcerting. But I just try and listen to my cardiologist as best I can. I was on fludrocortisone (florinef) but stop taking it at 6 weeks. That was a personal choice though. Since there are less than 200,000 people in the u.s. with POTS it is hard to find drs who even know about it. So if you have a cardio, then I would listen to him the most.

[selevitto]

I have had POTS for eight years and I am having a LOT of dizziness here in my first trimester.  I can barely stand up in the mornings.  I personally do not want to take medication though so I've been loading up on Gatorade which isn't helping yet.  I don't remember having a lot of problems with it during my previous (first) pregnancy though so I'm hoping it will get better as my pregnancy progresses.  I Just thought I'd give everyone a heads up on the epidural though.  I was told by an anethesiologist when I was in labor with my first that I was not a canidate for an epidural because of my condition.....not something you want to hear during really painful contractions!!!  They've become so common place that I just assumed it would be available to me when I needed it and it was in my birthing plan!  My doctors never told me it may not be an option.  I would recommend researching other forms of pain relief (such as medications and breathing techniques) so that you are prepared to give birth without one.  I would have made sure I was much better prepared had I known it wasn't an option.

[Heiferly]

You may want to take the following article to your doctor:

http://www.anesthesia-analgesia.org/cgi/content/full/104/1/166

It is not universal practice that POTS patients are not candidates for epidural.  Sorry to hear that this was not discussed with you sooner for your first pregnancy so you could be prepared for their decision to let you have it.  

[cjliving]

It's nice to find others going through the same thing. I had my first little one and my first doctor just blew if off... so I switched!! And I love her. She didn't know anything about POTS but she researched all she could and came up with a good plan of attack. All the other doctors and nurses knew about me.. so I went in they were all prepared. I couldn't even stand at 37 weeks so they induced me. They gave me an epidural early on so my HR wouldn't go too high. They just had to give me a different kind of medicine than normal. They also pumped a lot of fluids on board, and had me push in a different way.. but I ended up having a c-section because I wasn't progressing after 22 hours! But it was nice to find a doctor who truely wanted to help me. I am pregnant again with my second.. and I can barely function. I have to wear compression socks to get around.. and have to stay inside because it's summer and heat just makes it all WORSE. Hang in there ladies.. people are starting to realize its just not all in our heads!

[dmolina]

I am in need of any information on POTS and pregnancy. I am currently 23 weeks. My ob never even heard of POTS and my cardiologist has only had one case of it, without pregnancy. Any information would be greatly appreciated.

[Frankiebell]

I was diagnosed with POTS 3 years ago, though I've been sick for over 10. At the time of diagnosis I was basically bed bound - I'd faint on trying to stand. I was on Midodrine for a while but have been functioning fine for the last year and a half on high doses on H20 and salt, and not being upright without full compression stockings. (this makes the beach a real hoot.)

I am now six weeks pregnant, and completely exhausted. I work from home, full time, but I have been unable to really sit up even for more than an hour here or there. From what I've read here, I guess this is the norm for the first trimester, which really *****.

Anything that has helped y'all with the exhaustion?