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.
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.
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.
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)?
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.
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.