POTS and pregnancy

[roelse]

I am a 32 year old female with POTS and I just had my first pregnancy and miscarriage. Does anyone know if POTS increases miscarriages? Also, is pregnancy dangerous for POTS patients?

I had an episode during this pregnancy although medication normally keeps me under control now. Something went dangerously wrong during the episode and it felt life-threatening. I have had POTS my entire life and am accoustomed to episodes and passing out for hours but have only had a few life-threatening episodes, the last time being 8 years ago. I was diagnosed 2 years ago and put on medication which cut my episodes down to only one every couple months.

I am a newlywed and my husband, who is a neurophysiologist, believes pregnancy is too dangerous for me. Are there any doctors who have experience with POTS patients and pregnancy?

The thought of not being able to have children is tough. We cannot afford to adopt and my husband does not feel it would be good to adopt special needs children because of my POTS problem though we would otherwise have been open to that. My family lives overseas and my husband's family is far away. It is hard to think of not being able to have any children whether naturally or through adoption.

If you have any information about POTS patients and pregnancy, I would appreciate it.

[MomtoGiuliana]

I certainly feel for you.

I am 35. I did not know I had POTS until I was diagnosed post partum. You can read my story on this website (Katherine's story) so I won't repeat any of it in this message. It sounds like your situation may be extreme and you may need to be under the care of a specialist during a pregnancy and even advised as to whether you should attempt one. I was in a life-threatening situation during labor. Today my baby and I are fine and I am recovered for now from my extreme POTS symptoms.

Many women with POTS seem to feel better during pregnancy--I think especially in the 2nd and 3rd trimesters. There was another recent discussion on this board about POTS and pregnancy--you might want to take a look, if it is still there.

As far as adoption, my husband and I are interested in adopting a 2nd child. Like you, we are not comfortable adopting a special needs child for the same reasons. It is time-consuming and expensive to adopt, but "middle" income couples can do it. I have several friends who have adopted children and their household incomes are between $50,000 and $70,000 a year. If you'd like to stay in touch on the matter of adoption (obviously not a POTS topic) send me a personal message.

Best wishes,

Katherine

[Louby]

Dear Roelse,

I really feel for you, it must be an incrediably difficult time for you and your partner.

I had heard people talking about the NRDF on this forum, and found the site this morning. They have a handbook and some other interesting info, so perhaps you will find something there that can guide you through your difficult time. (www.ndrf.org)

There are a couple of other ladies on this site, who have children and I am sure they will write to you with their own individual stories and advice.

Since i joined, i have found this forum a great source of comfort, and i am sure you will do too. One of the best pieces of advise i had when first joining was from Tearose, and that was to find some time to read through all the historic posts.

Wishing you all the very best of luck, and please keep us updated.

L

[lalalisa]

Roelse,

I just wanted to write and say thanks for your post - I also have the same concerns as far as pregnancy. I can't imagine losing a baby through miscarriage, it must be really painful.

My husband and I also would love to have children but are unsure as to what it would do to me or the baby.

Can you take any of the POTS meds while pregnant?

Have a good week,

Lisa

[MightyMouse]

Hi, so sorry about your miscarriage

As for the risks from pregnancy, I'm not sure that's there's a completely clear answer.

I asked that question of Dr. Grubb (an E.P. Cardiologist who sees many POTS patients) when I saw him at my first appointment. He felt that I wasn't at any higher risk, but was more concerned with how I'd keep up with the energy needed to care for a baby, toddler, etc. Granted, I decided that I would not have a baby, not because of my POTS, but because I have many other health problems as well.

I think it still may be possible that there are additional risks to a pregnant woman and baby if the mother has POTS, however, there's really not enough medical information out there to conclusively say either way. Hopefully more members will respond to your question.

Nina

[pugszhill]

This is also a topic I have been concerned about. I am about to be married in April and we want children also.

I had an appointment with Dr. Grubb last tuesday and we discussed this topic. He told me he has helped 300 POTS patients have babies. He told me there is only a 20% risk of passing this on to our children. He also told me the first trimester Id be the sickest, the second I'd feel good and the third I'd feel bad again and that most POTS patients are put on bedrest for the last 4-6 weeks of their pregnancy. He also told me I could stay on all my meds except my Dilaudid which is a pain med. I'd have to try and decrease it or switch to something milder. I'm on midodrine, propranolol, zofran, digoxin, eprex, dilaudid, and a few others that aren't a concern at all for other reasons. I just had my second pacemaker surgery and lead replacement in Novemeber and he alasostated that he asks POTS patients to be stable to for 1 year before trying for children. He did mention that everyone's "stable" is different. If your health stays in the same shape for 1 year that is your stable. I am going back in November to see him and discuss this again cause at that point I'll be ready to start trying I hope.

He told me to not "not try" because of thinking i'll be worse afterwards cause he said just as many POTS patients get better or stay the same as get worse. So basically since I started seeing him 4 years ago he has helped 200 more people have babies and is better informed of what to expect and the risks. He said we all are high risk that try to have babies and that they monitor us very closely throughout the pregnancy. Also during labour they can give us meds thru IV as needed cause after we deliver he said our bodies change instantly right there and they can monitor us and give us things we need thru IV to help us quickly. He also said jsut as many have babies naturally as C-Sections.

Hope this helps a bit. Not sure if I answered any of your questions but I jsut talked about this with him on tuesday so it's still fresh in my mind.

Janette

[MomtoGiuliana]

I would assume that Dr. Grubb would be referring to his personal professional experience/anecdotal information if he said "there is only a 20% risk of passing this on to our children". I didn't think that was known. I saw my POTS doctor (Dr. Nsah, formerly of the Johns Hopkins clinic) today and he said on this topic that he has seen a tendency for mothers and daughters to both have POTS. He didn't offer any statistic.

Also I found it interesting that the doctor predicted how you would feel in each trimester. What he described was not the case for me. I was off and on ill (with no diagnosis at the time) from the 2nd trimester. I felt great (other than morning sickness) in the first trimester. Other POTS patients on this site have said they felt better and better as the pregnancy progressed and were not on bedrest in the last month. But, I assume this is his general experience with POTS patients' pregnancies.

I also think the statement that all POTS patients are "high risk" when pregnant is surprising.

It does certainly make sense to be under the close care of your specialist during a pregnancy.

[pugszhill]

This is just what he told me. I don't necessarily believe or agree with it all either. Personally I think each person is different and no two pregnancies are the same with anybody. I think each person with POTS needs to evaluate themselves and their extremes of POTS and do what they feel they can handle. I sometimes wonder if I could handle a pregnancy cause of the severity of my POTS and even afterwards if I could care for the child cause somedays I can barely care for myself. Then I will have a length of time when I feel a tad bit better and think ya I can do this cause I'll adjust as the baby grows and therefore my energy will increase slowly with the needs of my child. Sometimes after being with my 3 adn 4 year old neices I am totally worn out but have to remember I wouldn't be thrown into that energy and need level right off, you'd grow with your child and gain strength and energy slowly. I just wanted to share what I was told recently not that I was agreeing.

Janette

[roelse]

Well, I sure appreciate all the replies you ladies have given me. It sure is comforting. I found the other topic on POTS and pregnancy which was helpful too.

I have gone through my POTS alone. I don't currently have a POTS doctor. I was diagnosed up at Cleveland Clinic by top-notch specialists but their strong point is not patient education. So, I'm on my own again. It is wonderful to have people to actually talk to who understand. It's like a luxury for me.

I think that since this last pregnancy was abnormal that may have been why I had so much trouble with my POTS. A normal pregnancy may be just fine. My hormone levels were double what they should have been for how far along I was.

I have read several places that when POTS is passed on hereditarily it is mostly from mother to daughter.

I was sad about the miscarriage but not like someone might be if they had been trying and trying to get pregnant and then miscarried. The pregnancy was a shock though I was very excited for the day or 2 I knew about it and thought things were okay. I was somewhere between 3 - 6 weeks we think but they couldn't tell because everything was messed up.

The hard part is thinking about the future. I want to consider my husband's concern about the possibility of it being life-threatening because if he had to take a risk that might endanger him I'd be concerned too. That might be putting it mildly, I'd probably be scared to death. However, the only reason I have gotten better in the past when I was very sick with POTS is because I ignored some of doctors' advice. Sometimes you just have to take risks. I really would like to have children.

I guess in the long run the best is to remember that there can always be blessings in disguise. It's not the end of the world if you can't have kids (though it might feel like it if that's what it comes to), and I will just open my doors to other kinds of people that I might not otherwise reach out to.

Sarah

[EarthMother]

Big hugs to you Sarah. A miscarriage is a big loss. My OB told me that it happens close to 50% of all pregnancies. Most of which are undetectable (a couple days late for a period etc.) In addition, our hormones are actually HIGHER during that first tri-mester as things are getting rev'd up then they are at full term. This means that things like postpartum depression can be even worse for us with a miscarriage. So give yourself plenty of time and don't beat yourself up if you are having the "blues."

Each of us are so different with our POTS and each of us have had very different pregnancy adventures. I have three children and indeed each pregnancy was very different. So no guarrentees. But I suspect you've learned that already about life with POTS.

Best advise shop around for a doctor who is supportive. Or shop around for a new husband! (Hoping from reading your humor post on the boards you will know the latter is intended in jest. He sounds like a loving, caring man who at heart is only thinking about your best interest. Good luck to you both!)

Good thoughts your way,

EM

[ethansmom]

I'm sorry I didn't respond to this post sooner- I've been pretty busy this week...but I just wanted to share my experience with POTS and pregnancy.

Let me start by expressing my condolences to you- the miscarriage must have been heartbreaking, and I really hope that you are doing well and coping- it sounds as if you still want to try and conceive, and I really wish you the best!! It's such an amazing experience.

I became pregnant 6 months after being diagnosed with POTS, after only 2 months of "stability". My doctor was by no means an expert, he had diagnosed me with POTS but was not an autonomic specialist (just a cardiologist). We worked together and he did monitor me closely in conjunction with my midwives, and everything went perfectly. I felt better and better as the pregnancy progressed, and managed a drug free labor with the help of a midwife. I feel that this was the best thing for me, and it sped up my postpartum recovery significantly. I gained a TON of weight from the Florinef (which we decreased as the pregnancy progressed), and my BP was sky high towards the end- I was on partial bedrest from 36 weeks until the baby was born. In the hospital I was given magnesium to lower my BP and extra IV fluids. Other than that- no problems. I did not experience a return of my symptoms until the baby was about 5 months old, and they gradually got worse and I ended up going back on Florinef and starting Pro-Amatine about 7 months postpartum- which I am still taking 6 months later

I feel that I am stable most of the time now- there are good weeks and bad, but in general, I am happy with the way things turned out. Motherhood is sooooo tiring, but well worth it!! It's the most rewarding job but also the toughest thing I've ever done. Having a chronic illness and being a parent is the most difficult task I've ever tackled- most of the time I feel guilty that I'm not giving him 100%- but then I have to remind myself that it could be a lot worse. It was worth everything we wnet through, and I'm so glad he's here (now 14 months old).

I hope that everything goes well for you and your decision to conceive- the most important thing is to take good care of yourself and stay in close contact with your doctor during the pregnancy. Best of luck to you!!

[roelse]

It's encouraging that they didn't automatically label you high risk and insist on all that goes along with that.

I have been wondering about labor. I have read that when midwives are involved studies have shown that both the baby and the mother are healthier afterwards.

Part of me thinks that if they label you high risk because of POTS and take care of you in that kind of facility you're going to be more stressed because of it which could add to the problems. But on the other hand, they'd be there if anything went wrong. I guess my experience is that there really isn't anything they can do medically to prevent your blood pressure dropping anyway, except the extra fluids with the IV. So that's why I wonder if it wouldn't be better to go the more laid back route of using a midwife.

[ethansmom]

I had started out with a regular OB doc, but quickly turned to midwifery because I realized exactly what you said- the kind of treatment that goes along with being "high risk" and tied up to tubes, c-sections, etc... would make anyone a lot worse off. While I do think that POTS pregnancies need to be monitored closely, I am also a firm believer that pregnancy is a normal and natural state for the female body, and if we are allowed to exist naturally during pregnancy, and our labor and delivery is allowed to happen naturally , then everyone involved is better off =)

I did give birth in a hospital, but the particular hospital I chose had a birthing center which was very cozy and in a home setting- I walked away from the experience feeling very warm and fuzzy about it all. The midwives used the birthing ball, whirlpool, hot rice packs, breathing- anything they could do to help me through it. It wasn't scary or intimidating at all- the magnesium was the worst part of the whole thing, but my BP was sky high so it really was necessary. I was also allowed to eat and drink as desired, walk around, etc...I was not tied to a bed or told to lie down or anything like that. And believe me, when you are in labor, you need to be able to do what you want to comfort yourself. I would definitely recommend going the midwife route if you feel more comfy with it

[EarthMother]

You may want to consider a Doula -- I think it is the best of both worlds. I used a Doula for my 2nd and 3rd births and it was wonderful. Unlike a midwife who are often not welcome in the major hospitals, a Doula is a professional birth coach who comes with you and your husband to the hospital and stays with you both through out the labor.

My Doula was able to fight hard for the things that I wanted -- because let's face it I was pretty busy at the time -- and for the most part everyone else left us alone so it really felt like we were having a small quiet at home birth.

I drew up birth contracts with my Doctor (and the other OBs who were on call for him) in advance and made sure that we sent these ahead to the hospital so that everyone knew what my plans were and that they were supported by my OB.

Good thoughts,

EM

[MomtoGiuliana]

I also had a doula and wrote a birth plan. I also highly recommend it. Even though I ended up having to have an emergency c-section under general anesthesia, I did have several hours of drug-free, IV and machinery-free labor. We live in a rural area and I had no choice of hospitals and there are no birthing centers. Our hospital is not the most up-to-date on birthing. I found it helpful to have an advocate besides my husband with us.