Pregnancy With Pots

[Ctat333]

Hope everyone is finding today a good day!

I was wondering how many women on here have gone through a pregnancy after being diagnosed with POTS? I have had 2 perfectly normal pregnancies since my symptoms started, but as some of you know, I have not been officially diagnosed yet. I am anticipating a diagnosis by Feb or March when I am able to see Dr. Suleman here in Dallas.

I went to a birthing center and was cared for by a midwife for both of my pregnancies. Both deliveries were done drug free. I had no complications with either. I WAS diagnosed with SVT during my 1st pregnancy, and had my ablation 4 weeks after giving birth to my youngest. I saw a cardiologist during both pregnancies. I complained of POTS symptoms to both my midwife and my cardiologist (lightheadedness upon standing, racing heart, dizzy, very tired) but I was told that was "normal" for pregnant women to experience. I tried explaining that this had been happening to me for some time before I got pregnant, but they just brushed it off.

My hubby and I think that we may want to try for one more little one. I have been doing some research on POTS in pregnancy, and from what I have read, most doctors say it is safe, but still want the patient classified as a "high risk pregnancy." This is where my questions come in. Has anyone here been classified as a "high risk OB/GYN" patient strictly due to their POTS? I would have no other reason to be classified as "high risk." If I was classified as that, I would not be able to go back to the birthing center and midwives that I adore so much.

We are not planning on trying to expand our family anytime soon, but I did want to go ahead and start looking at our options. I would love to hear advice from any of you! If you have any research or lit that I can read, please also send that my way!

Thank you in advance!

~ Alison ~

[deucykub]

I became pregnant following my diagnosis with POTS. For me, it was a very difficult pregnancy. Vomiting through the first trimester, practically bedridden through the entire pregnancy. I'm not sure if I was classified as high risk, but my OB kept a group of specialists consulted at the hospital, and they provided advice along the way. I also was instructed to see a cardiologist throughout the pregnancy who consulted with my OB. I had a Cesarean due to placental previa; otherwise, my daughter's delivery was perfect, and we now have a healthy, gorgeous, entirely-too-smart-for her-own-good 4 year old.

[Kay107]

I was classified as high risk solely due to POTS. The doctors didn't know much about POTS so they asked that I not exercise etc to keep my HR down. The maternal-fetal dr. did ask my EP to write an explanation of the anesthesia I was allowed to have in case of C-section, which we did end up needing. I was very sick the entire 40 weeks and had to have my parents stay with me as my exhusband was away for work almost the entire pregnancy.

[shan1212]

I am not a doctor, obviously, but it would seem to me that if you have already had two pregnancies while symptomatic with POTS and everything went OK, then you could figure on things going just as well this time. Of course, anyone, POTS or not, can have a very different experience one pregnancy to the next.

I was diagnosed during my first trimester with #2, and my OB had me on home IV fluids for a while and a low dose of metoprolol in coordination with my cardiologist. The birth went fine. Actually, I switched from my OB to a midwife practice at 37 weeks, and that probably saved me from having a repeat c-section because at 38 weeks I had a bad POTS/tachycardia episode and called the midwife in a panic. I'm positive my OB would have been like, "Just come in now for a c/s," but the midwife was like, um, take a benadryl and call me when you're really in labor. Not as sympathetic as she could have been, but hey, it worked out in the end.

But anyway, now I'm seeing an internist who's our local POTS guru, and he seemed shocked that I hadn't been classified as high-risk and that the pregnancy went OK anyway. I shudder to think of something going wrong because I wasn't being given the correct care. When it comes to your baby's health, I'd say that it's better to be safe than sorry. You could still have a med-free birth at the hospital, maybe using one of your midwives as a doula? But this is all conjecture because we don't know what they'd say. I assume the high risk pregnancy stuff has more to do with how they monitor the baby and less to do with how you get the baby out, especially if you aren't planning to use anesthesia. Maybe your POTS doctor/s would only need to coordinate with your midwives and nothing else would have to change. This is probably one of those situations where the midwives will be learning about POTS and pregnancies at the same time that you do.

[MomtoGiuliana]

I believe the reason POTS patients are classified as high risk (or might be) is b/c they may need to be a on a medication where, for them the benefits outweigh the risks, however, the med is not ideal to be taking during pregnancy. High risk ob specialists know a lot more about evaluating these risks than other drs from what I understand. The other reason might be b/c of special considerations during labor/delivery.

I had one pregnancy--not diagnosed w POTS until postpartum-- very difficult 3rd trimester and post partum and dangerous event during labor that resulted in emergency C-section. I don't believe the problem during labor was directly related to POTS, but it could have been--in my case. But there are plenty of patients here who have had uneventful pregnancies and deliveries. We do all seem to be different.

B/c of my life-threatening and unexpected experience, I personally worry about women giving birth without immediate emergency medical assistance available if needed. This is just my personal bias. I think it is wonderful when birth does not have to be a medical event--most of the time it doesn't have to be! But that small risk is there.

[Susan3]

Hi,

I have had 2 uncomplicated (fortunately!) pregnancies with a POTS diagnosis. I consulted my doctors before getting pregnant and I founds meds that helped stabilize my condition (metoprolol and midodrine). Most docs said I would either feel much better or much worse.....not all that helpful. None said it would be a bad idea to get pregnant. I was high risk and saw a maternal fetal specialist for both pregnancies-I had wonderful medical care and stayed on my meds for most of pregnancy. I felt fantastic with my first and was able to go off all meds because I felt so good. I imagine it was because of the increased blood volume and my insomnia went away. As for delivery the docs were very attentive to making sure my b.pressure and heart rate were stabilized. I was high risk because of POTS, maybe also because of my hyper mobility EDS and the potential complications that could happen with that. Everyone is definitely different, I feel very fortunate to have had a very positive experience! Good luck!

[SpinnyC]

I've been thinking a lot about pregnancy and pots lately. How did those of you who've had children deal with vomiting- Did it make your Pots a lot worse? I know if I get sick now my symptoms go crazy.

How would you have classified your symptoms before pregnancy? Were you all in a place where you felt your symptoms were well controlled and didn't limit you much.

Also, how was it after the baby- were your symptoms much worse due to things like lack of sleep and loosing that extra blood volume?

[Susan3]

Good questions SpinnyC. I imagine everyone is different in their experience and I can say that I was lucky to not have vomiting during pregnancy. If I did I imagine POTS symptoms would have been much worse. Before I got pregnant I finally felt 'stabilized' for a few months beforehand, but I didn't feel great. It was pretty much the first time in 3 years I didn't feel like I was dying-and it was because I started taking midodrine and really watched my triggers (exhaustion, alcohol, carbs, too much social time, etc...). The first trimester I was exhausted but the difference was that I could actually sleep really well rather than that constant wired but tired feeling. I was so excited to finally be able to sleep! I think that got my pregnancy off to a good start. Because I felt better during pregnancy I made sure to exercise as much as I could to stregthen my body.

Postpartum is tough. I felt POTS symptoms return immediately after giving birth, probably from the lack of blood volume. Then it just seemed like a very slow progression for the symptoms to return....maybe something to do with hormones too. The fatigue of having a newborn is hard physically and emotionally and you need support from friends and family so you can rest as much as possible-I think this is true for every new mom.

[MomtoGiuliana]

SpinnyC

Not every pregnant woman has morning sickness or vomits with it, of course. For me, the vomitting associated with morning sickness did not prevent me from staying hydrated. Severe morning sickness can land some women in the hospital in the first trimester so they can be kept hydrated but that is fairly unusual.

My symptoms were mild pre-pregnancy, I didn't even know I had something called POTS. Pregnancy made my POTS symptoms worse. And I was finally diagnosed 4 months after delivery.

My symptoms were probably at their worst in the weeks following delivery, definitely not getting much sleep did not help. Also breastfeeding is quite demanding on the body and I had had an emergency c-section. Surgery can be a trigger for POTS symptoms.

I think you will find that every experience is unique but I have noticed that many of us found/find the postpartum period extremely challenging, but most women do, so it is not surprising this would be a difficult time for POTS patients. I think it is not just the change in blood volume and lack of sleep but also the hormonal shifts as Susan notes. It can be an emotional time too as Susan says (due to hormones partly at least), and a big life adjustment and some stress too to be responsible for a new little someone who completely depends on you.

[LittleOne]

Also, how was it after the baby- were your symptoms much worse due to things like lack of sleep and loosing that extra blood volume?

You blood volume increses in pregnancy to compensate for the loss at birth, hence why you have a BP slump at the start of the second trimester. So theoretically your body should cope well unless you have a major haemorrage. But the healthiest of women would then have complications.

In terms of where to have your baby, only you know where you're going to feel safe and secure. You will birth better and easier if you're at ease and not stressed. Plus, and correct me if I'm wrong, there's not much in the way of evidence to suggest that anything could go wrong in terms of POTS in pregnancy.

I would say your body and your birth, your choice.

[Lisalou]

I am planning for a little person, a few months yet but I want to be ready for what might happen

advise, tips, yes do it!!! what can I expect??

love to hear from you x

[Bigskyfam]

I have 5kids 18,17,16,15,6. Dx with pots fall 2013. My hubby thinks it started with my last pregnancy. Was a difficult pregnancy. Struggled with gaining weight, gestational diabetes, preterm labor, csection and anemia afterward due to bloodloss. Bedridden for 1-2 months during dx. Hard for me, my Kids and hubby. Back and forth to school, activities and such. My hubby was mr mom for a while.i have 2 kids, hubby had two and we had 1 together. Would've loved to have more or even adopt. But now, I don't see it as an option. I'm able to drive, do housework at a slow pace and go to limited places.i work just a few hours. I hope to improve but fear setback. My kids were amazing during that time. Missing out on parent teacher conf, Afterschool activities was hard for me as mom. I'd always been an active mom. Took the kids shopping for clothes, fishing and to the rec areas here. Now,I've had to readjust. I don't want my kids taking care of me, especially at a young age. (36). Our oldest is off to college now 4 hrs away. Hard not being able to go pick her up take her back. She stayed home jan term to help here.. Even thiugh i said it was ok and to work to be able to pay here tuition. We can't help that much as we've had a drop in income. Our kids have always had enough but would've liked to give them more.

[Marigold]

Hi there. I realize this is an older post but since it was the first link that came up on my Google search for "POTS and Pregnancy," I wanted to add my experience in case this page comes up for others who are searching for similar answers. I want to give a message of hope and a cautionary tale. 

I first became pregnant in my late twenties (12 years ago) long before dysautonomia was understood as it is today. That said, I had already suffered symptoms for many years: classic migraines (with aura), hypotension (80/50), arrhythmia,  sleep disruption, edema, chronic dehydration, and a nearly entire absence of sweating, despite being a serious student-athlete.  (For example, during long runs in August heat for HS X-country practice, I still did not sweat.)

First, I would say that pregnancy with dysautonomia was a nightmare: severe weight loss, vomiting multiple times a day for seven months, and constant overwhelming fatigue. I basically slept for the entire pregnancy. I also lost 30 lbs. (When I conceived, I weighed 183 lbs. I tracked my weight diligently during pregnancy and weighed 175 at full term. When I left the hospital after giving birth, I weighed 153 lbs.) I was diagnosed with hyperemesis gravidarum and was treated pharmaceutically and with IV fluids as needed. Zofran was a true miracle for me. I used it in very small increments just to get me through mandatory meetings w/o running to the bathroom to throw up. However, the entire experience absolutely derailed my professional career. I was a Ph.D. student at the time. I spent my fellowship year in bed, which delayed my graduation by many years. I also lost my professional self-confidence. Again, this was before mainstream medicine had an idea of POTS. I believe I would have felt very differently had I known then what I know now. That said, my pregnancy and birth were otherwise extremely healthy. 

Second, I would add that dysautonomia did seem to not impact the health of my child at all. Despite my horrible symptoms, I gave birth to a full-term 21-inch long 10 lb. healthy baby girl. She is now a brilliant almost-eleven-year-old: empathetic, outgoing, athletic, musically talented, and attending a private school for gifted children on a scholarship. 

My experience caused me to choose to not get pregnant again. That is a personal choice based on my circumstances (namely, my inability to stay in bed for 9 months). I understand that others may view this as unacceptable. But I do want to communicate that there is hope and despite the suffering, you can have a fabulously healthy child. 

I still have symptoms, which I treat with diet and exercise and sleep hygiene. I now get botox for my migraines (which is very effective) and I take modafinil for idiopathic hypersomnia (also very effective). Taking those steps (which involved time-consuming diagnosis and great medical specialists who advocated for my insurance to cover my expensive medical interventions) has helped me regain my professional momentum. It has also allowed me to make great strides in identifying underlying medical conditions, like POTS. A long process, but worth it. For those who already are diagnosed with dysautonomia and planning for pregnancy, remember, be encouraged that you have the benefit of starting out with much more knowledge, resources, and self-awareness. It takes courage, patience, and good healthcare, but you already know that