Pots & Pregnancy

[shannon]

Hi everyone,

It has been a long time since I posted here, but I am looking for your thoughts on this.

I am planning to start trying to get pregnant in about a year (for the first time). I would like to start planning ahead in regards to my POTS treatment and management, but I know that my local doctors are very uneducated about POTS and I actually don't trust that the advice they give me will even be founded in research and evidence. I am trying to self-educate as much as possible.

A little background: I am 29 years old (As of yesterday!). I was diagnosed with POTS at age 17; symptoms were there throughout childhood and worsened at age 13, staying consistent until about age 22 or so. I take Mestinon everyday and Inderal everyday, and my symptoms are very well managed right now. I work full time, I have started running, and I live a very normal life. I still need to maintain a strict eating and sleeping schedule or my POTS flares up (but can get back under control again within a few hours usually). I also still tire more easily when up on my feet, but I manage MUCH better than I used to.

Mestinon has not been researched in connection with pregnancy, so I would like to get off of it (which is kind of terrifying!!). I am not sure, but I believe inderal will probably be okay to stay on (though I worry that it will make my BP too low without the Mestinon counter-acting that effect). My goal is to have a natural birth if possible, using breathing techniques.

I have been searching for research on POTS and pregnancy, and it seems to be limited. Does anyone have good resources on this? Has anyone had a positive pregnancy/birthing experience while having POTS? Are there any specific risks that you know of that I should discuss with my doctor in advance? I am planning to have a midwife as my primary provider throughout the pregnancy and labor, but I will also see a doctor for managing the POTS aspect.

Thanks in advance!

-Shannon

[lewis]

strict sleeping and eating schedule and pregnancy don't mix all that well. The thought of having a new baby with this disease, makes me sick to my stomach and I am not even a woman so I wouldn't have to go through anything even close that you would go through. I am not trying to discourage you, I just know I couldn't do it.

[badhbt]

I am 35 weeks pregnant and I have had a pretty easy pregnancy. I have seen a cardiologist and Neurologist, during my pregnancy. They tell me that there is no real evidence that pregnancy counter indicated in POTS patients. Some patients even feel better because you have 50% more blood volume. I am concerned about the delivery part because I know that can cause a relapse. I am like you pretty much living normally and I don't want to go back to the old days! The only suggestions they have given my OB is to make sure I have IV fluids during delivery and to try to keep the ANS calm via epidural/pain medications. Other than that not much we can do until it is over. I can give you an update in 5 weeks

Wondering how other people did after delivery...

[shannon]

Thanks, badhbd!! Glad you have had a good pregnancy! I hope your delivery goes super well too!

Do you mind me asking if you've been on any POTS meds while pregnant?

[misstraci]

Happy belated Birthday!!! It sounds like your symptoms are under control for the most part and the pregnancy itself would probably not hurt but help with the increased volume. Continuing to eat right and exercise will also both be positive habits for your pregnancy. I didn't have any suggestions or first hand experience or know anything about your meds and all that, I just wanted to say good luck and if this is what you and your family want, then go for it. Each of us are different, you never know how it's going to be until you try it yourself!

I have two kids but didn't have pots until after my second, I think I developed it because of issues I had following the delivery.

Good luck!!!!

[castronovo112587]

I acquired due to pregnancy and child birth. I have heard that during pregnancy many women will feel ok due to the higher blood volume but I imagine after the trauma of childbirth you would experience a big flare up. Best wishes

[badhbt]

I will let you know how it goes...5 weeks and counting. I am not on any POTS meds. Ironically I started tapering them off right before I got pregnant.

[shan1212]

I believe I've had POTS since I was 14, but I avoided things that caused me problems and got into really good shape in my 20s, so it was a non-issue. First pregnancy was fine, but after I weaned her at 12 months, I started having POTS episodes (unknown to me) where I'd wind up vertiginous, vomiting, super low BP, etc. Just brushed it off. Second pregnancy, as early as 7 weeks I knew something was "wrong." I couldn't tolerate sitting upright at all and was immediately diagnosed based on a poor man's TTT. Things got better in the second trimester, but I still had to deal with being deconditioned from a few sedentary months and having to take care of my toddler. The only medication I took was 25mg Metoprolol, though I don't know that it helped much. I was given a week's worth of saline infusions in the first trimester, and have been told by my now POTS doctor that he would have done IV therapy throughout and not Metoprolol. He says he works with an OB and they could take good care of me in a future pregnancy.

I was fine with the delivery -- even managed to have a vaginal delivery despite a prior c-section, though I needed an epidural because I was having intense adrenaline surges -- and crashed about 3 weeks later, winding up in the stinky old ER. Again, I wasn't with my good doctor yet. I remember my husband putting a dirty cloth diaper back on the baby because he didn't realize it was a bag full of dirty diapers he was grabbing as we ran out the door (sad hospital doesn't have a L&D or diapers!), and I was like, "You should have asked me! There are two emergency disposables in the pocket!" as I lay there getting fluids. Random memory. Anyway . . .

I'm much better with my current doctor, so who knows how things would have gone if I'd had his help at the time. He told me that breastfeeding actually affects your bodily fluids more than pregnancy, so that's something to consider, and that's what caused the initial relapse I believe when my milk dried up with my first. I had trouble with anxiety while breastfeeding my second and had to use donor milk while I took Ativan on an emergency basis, though I later determined via Dr. Hale's Pregnancy hotline that I felt comfortable nursing through it and watching her for signs of drowsiness. Google Dr. Hale at Texas Tech -- they have a hotline you can call with the latest research on medication use during pregnancy and lactation. Most doctors are afraid to prescribe anything, which is a shame.

The biggest thing that has helped me now is Midodrine. What I thought was anxiety is just my body's response to not getting enough oxygen to my brain. I don't know if it's contraindicated for pregnancy and breastfeeding because I started taking it after, but it's been the biggest help in my symptom management, along with eating and sleeping well, exercise, knowing my limits, etc.

I don't know if this has helped or scared you. I have had many moments where I felt I couldn't handle the symptoms, but I always have, and now with the Midodrine I don't have those moments anymore, thank goodness. I remember in the first trimester counting down how many days I had left until the second trimester, and thinking, "Oh dear heavens, I have 50 more days of this to go," and feeling like if I had a miscarriage, I just couldn't bear to try to get pregnant again. But that was a fleeting feeling, and now I have two wonderful daughters that I wouldn't trade for the health and body of my 20s. If I got pregnant (accidentally -- have the Mirena now), I would just suck it up and persevere, knowing that it's a temporary thing. But I also have to worry about my ability to take care of the two children I already have, so it's not something we're planning on. We have adopting a third on the table, but I think we're leaning towards not. It's hard to think about going back to the sleepless nights once you have two bigger ones!

[abbyw]

Hi,

I haven't been here for ages and ages, and I don't know if this will help you at all, but I thought I would try to help with an answer if I could-

I had a baby (girl) a year and 4 months ago, with POTS. My POTS is very under control with Prozac and wellbutrin, and everything went fine. The only thing that stood out was that when I got an epidural during labor, I fainted. (Twice- they messed it up the first time, and we had to do it again, which meant another faint.) But they quickly gave me some adrenalin, and everything was fine. Baby is great!

Good luck to you!

Abby

[Findinghope]

I had a great pregnancy after being diagnosed with POTS. A healthy baby girl via Csection (she was breech and cord issues) nursed her for 15 months. Best wishes to you I am sure that it will be OK.

[jackiemxoxo]

I think pregnancy and pots can really vary depending on the individual. I would recommend that you try when you are going through a good period (which seems like you are) and to start taking prenatals early. Doctors will recommend that you start taking them at least 3 months in advance anyway but you could start even early to learn which ones you tolerate best. I recently suffered a miscarriage (which i think might be linked to the fact i have the mthfr gene) but I also have a very healthy 2 year old.

I have had POTS for 5 years but it was in remission at the time i decided to get pregnant. Like you, I was super nervous but everything went pretty well. I will premise this with everyone's experience is different, but honestly I never felt better than when I was pregnant in my second trimester. The extra blood was awesome, my gi symptoms improved, and so did my moods/anxiety. The first semester was pretty nerve wracking because I went through weird fevers and pots symptoms around 6 weeks but I read more about this (i forget where) and it explained that an autonomic storm can occur during this time. After the first trimester I began to feel better. My blood pressure got high around my third trimester (i'm hyperpots) and I ended up being induced 2 days before my due date. I got an epidural and talked to the anesthesiologist about this before time because I am super sensitive to medication. He titrated the dose very slowly but my blood pressure tanked and I almost passed out. The nurse gave me epinephrine which worked within seconds but I felt awful with high blood pressures for about 2 weeks after delivery. I breast fed my daughter for 15 mths which I think helped improve my pots symptoms too.

Like I said everyone's experience is different, I worked closely with my ob and maternal fetal medicine because of possible sjogren positives and to make sure my daughters heart was ok. Good luck and keep us updated, hoping for the best for you!