babies

[Emmasuffolk]

Not planning on having kids yet but had a long talk with doctors about the subject...They told me that i would have to be on a drip twice a day and that the whole situation can be tricky!

Surely loads with this condition still have children -dont they?

[MomtoGiuliana]

Hi Emmasuffolk

Welcome!

There have been many conversations on this forum about pregnancy, childbirth and parenting. So many, that I think we could have a separate forum on the topic of POTS and parenting! You may want to look back through previous topics to get some insight on your question. But, the short answer is YES, many of us are parents, and became so after diagnosis. Each situation is so unique that it is impossible to characterize the pregnant w/POTS experience and risks. However, MANY women with POTS feel better/fine during pregnancy (but not all, including me). The prevailing medical wisdom seems to be that if you are off all meds and stable, pregnancy is fine, if not, it may not be advisable. However, some meds seem to be considered ok during pregnancy, and others may fill you in on those details.

Best of luck to you.

Katherine

[sally]

Hi,

I remember (long time ago!) before the thought of a diagnosis with orthostatic problems (docs didn't know anything about this problem back then) Anyway, during both my pregnancies I felt great and finally felt like a normal person, no dizziness, no weakness, no fatigue...other than the typical pregnancy tiredness but alas after babies were born approx 3 weeks after, the symptoms returned and usually worse than before for a while until things leveled out to the normal crappy everyday feeling.

I never understood why this would happen because I would always hear people complain about feeling sick during pregnancy and I felt like a new person. From what I read on it now, I guess it's from the extra blood volume and fluid retention & vitamins etc. I didn't get a diagnoses for my health problems until my girls started displaying the same symptoms and were diagnosed.

[ethansmom]

Sally-

Your pregnancy sounds just like mine! I felt great the whole time, while all my pregnant friends were complaining about back pain and swelling- none of that bothered me at all compared to what I'd been through with POTS. After Ethan was born my symptoms came back little by little (a while later than yours though, around 7 months postpartum). Now I am managing this on a daily basis, but it has never returned to the severity it was prior to the pregnancy.

Emma- Most women with dysautonomia do acheive healthy pregnancies. Every woman does respond differently to pregnancy with POTS, though. I am not an expert by any means, but I do know that most women I've talked to who had POTS before they got pregnant did very well- those that had onset caused by pregnancy had a more difficult time. But either way it's well worth the end result

I agree that we should have a parenting forum- mainly because it's such a big issue when you have POTS and you are a mom or dad, or parent trying to conceive and want to talk to others who have been through it already. I wish I had this forum when I was pregnant, but I went into it blindly and was lucky not to have any troubles. I found POTS place when Ethan was about 6 months old.

[migraine]

Yes, I am about 7.5 months pregnant now and feel like I have been taking a little vacation from my POTS. I am sort of dreading post-pardum because I know my symptoms will creep back. I have been educating myself about POTS and pregnancy, I have a team of doctors ready to jump at any sign of trouble, and I have a history of good deliveries as this will be child #4. So, I'm thinking positive that everything will be fine. I guess it depends on the seriousness of your POTS and your symptoms.

[ethansmom]

I am very curious to know if POTS gets better with each pregnancy? I have never returned to the severity I had prior to my pregnancy with Ethan, and am hopeful that if I have more children I will improve each time...but definitely not counting on it

[MomtoGiuliana]

Jessica

I wish there were some way to predict the answer to your question! If someone could tell me with a good degree of certainty that POTS with my 2nd pregnacy would not be as severe as it was the first time, I might consider attempting another one. My fear is that it will be the same or worse. And I would dread postpartum too, when my POTS was at its worst, so I'd want to know about that too! Unfortunately, those answers aren't out there! And each of us seems so unique.

Katherine

[migraine]

Uh, well I guess I could answer based on my own experience if POTS gets worse...yes...and no... My main symptom is migraine. With the delivery of each child I had severe migraines; about once every 3 months after my first, once per month after my second, and 2-3 times per month after my third child....leading me to finally be tested and diagnosed for POTS. My other main symptom was fatigue, although no one has really taken that seriously with 3 small children

My children were all about 2 years apart. Towards the end of my second year, my body seemed to recover and just as my POTS and other aches and pains started to subside I got pregnant again. I guess everything was feeling better

I guess my opinion is that it could get better or worse, but give yourself a couple years to recover and make sure you have family support just in case. Unless you had a tramatic experience with your first one, I don't know why you couldn't have any more children. For me it was worth the extra migraines

[MomtoGiuliana]

My experience was fairly traumatic. I was pretty sick with POTS late in pregnancy. I had to leave work about two months before my daughter was born--I was just too dizzy and exhausted. I had to have an emergency c-section due to placental abruption during labor (my ob/gyn said it was due to the fact that the placenta was attached to a huge fibroid, but I think it had more to do with erratic blood pressure, that at times was going pretty high towards the end of my pregnancy). Post partum was bad too--for the first 5 months. My mom had to move in with us b/c all I could do was breastfeed and do very basic tasks.

[migraine]

MomtoGiuliana: I'm going to play devil's advocate a little (and I hope I don't sound like I'm downplaying your rough experience - or offend anyone else)...but that could describe anyone's pregnancy experience. I belong to a Mom's group and several of these ladies (without POTS) have had all or at least one of these problems.

I have read several of these postings and there seems to be so many negative responses in regards to POTS patients having babies. I was not diagnosed until after my third child, but had I read these postings prior to becoming a Mom I would have been terrified to conceive or deliver.

It's my (non-medical) oppinon that many doctors are telling POTS patients that they can't get pregnant or shouldn't just because they don't know enough about POTS and pregnancy. Many of us have mild (but annoying) symptoms that would not affect a healthy delivery; or very severe symptoms - i.e. if you can't walk across the room without passing out...you probably should not try to deliver and carry a child.

Just like women (without POTS) each person should take into consideration their current health situation and evaluate and educate themselves on the etire experience with and without POTS. I think it all comes down to an individual basis and I don't think we can really say one way or another POTS patients should or should not become pregnant.

The book "What to Expect When Expecting" is an excellent resource for possible situations described by MomtoGiuliana. I also extended my research to some areas of this web page as well as reading others' postings regarding POTS. My newest hobby is watching the discovey channel with all day episodes of "Birth Day" and "Special Delivery." It seems many women these days are experiencing erratic and high blood pressure during delivery, but it seems fairly common and treatable and I think they are able to handle the BP fluctuations of POTS patients as well.

This weekend it was very hot, and while attending a healthfair I felt very dizzy. A couple nurses were quick to fan me and take my pulse and blood pressure. They freaked out because my pulse seemed to be erratic. Assuming this was all POTS related I brought it up to my OB/GYN who was not impressed. He said most women have this problem in their last trimester. I'll be the first one to blame many of my illnesses on POTS, but I also have to admit that the ones I'm suffering from now seem to be just plain old pregnacy related.

[MomtoGiuliana]

Migraine, my experience was nowhere near normal ("anyone's pregnancy experience"). My ob/gyn blew it off saying it was just normal, although she did think it was unusual that I had such dramatic changes in blood pressure and heart rate late in pregnancy. My heart rate, by the end of month 6 was regularly 100 - 120 bpm, resting. She herself sent me to the emergency room from her office once when I came in with an irregular heart rythym that was prolonged and scared her as much as it did me. Most notable was that I was non-functional from the 7th to the 8th month of pregnancy--often bedridden for days at a time due to severe fatigue, dizziness, and weakness. I have never known of anyone pregnant to have that extreme an experience. Of course, I saw a cardiologist (prior to becoming so unwell in the 7th month, but when the first symptoms appeared) who told me I was deconditioned/didn't exercise enough. However, prior to pregnancy I did aerobic exercise three times a week, walked my dogs every day and took yoga once a week. I continued the yoga into pregnancy and then suddenly nearly overnight I was feeling badly and from there within a month became so ill--weak, dizzy, nauseated, exhausted-- that I spent days at a time in bed.

"The book "What to Expect When Expecting" is an excellent resource for possible situations described by MomtoGiuliana"--migraine, I could not disagree more strongly with this! That book was useless to me to help me understand what was happening to me.

I am certainly NOT saying that I think that someone with POTS should not get pregnant--please, I don't want anyone to misunderstand me. I am only describing my experience. Usually, when I do, I add the caveat that each of us is different in how POTS affects us and that many women with POTS have positive pregnancy experiences. I haven't even met anyone with POTS on this forum who had the severity of symptoms during pregnancy that I did. I believe and certainly hope that the severity of my experience during pregnancy was rare.

I do think, however, that people with POTS should be prepared for the unpredictable nature of POTS, and know that it is possible that they could have increased symptoms during pregnancy.

Also, I believe that my symptoms might not have gotten so out of control if I had been diagnosed with POTS at the time. I didn't even understand, nor did my ob/gyn, that I had a severe blood volume retention problem.

I would also note that, despite being undiagnosed, my pregnancy itself was healthy. My daughter was never in jeopardy during the pregnancy and she was born healthy and happy. And I do not regret the experience.

One more thing!

"...seems many women these days are experiencing erratic and high blood pressure during delivery, but it seems fairly common and treatable and I think they are able to handle the BP fluctuations of POTS patients as well."

In response to this, I would only say, that perhaps there are many people out there with POTS to some degree or another. This seems to be the prevailing view among POTS specialists these days. And yes, as we well know, POTS is not life-threatening (unless you pass out and knock your head or something).

Don't take offense at my response, but I have to say your comment at the beginning of your post hit a raw nerve for me. As many of us know, it is painful when anyone questions the validity of our POTS experience, or the severity of the physical symptoms we experience/d.

I hope our discussion is beneficial for others, since this is the purpose of this forum! I would be glad to continue the discussion.

Katherine

[ethansmom]

I can see where both of you are coming from. Like Migraine, I've often thought that doctors are far too hesitant to advise their patients to have children with POTS-and I think it hinders women from doing what comes naturally to them, as in starting a family. I think that there needs to be more research to back up the theories, and I think more women should become pergnant despite their obstacles, as long as there are no obvious reasons why they shouldn't- but that is speaking from my own experience of an easy and healthy pregnancy with no POTS complications, other than "normal" pregnancy stuff like dizziness and heart palpitations.

On the other hand, like Katherine, if I had had a dangerous and/or scary birth experience that was beleived to be related to POTS, I would have to consider the pros and cons of conceiving again (which is why I see adoption as a beautiful option for you and your family, as we've talked about before ). I haven't (and would not) question the validity of your experiences, and I respect and and all choices that a woman makes for her own health and that of her child.

The bottom line is that we ALL have different birth experiences (POTS aside) and we have to accept that for what it is- and value each others thoughts and opinions on the matter at hand. I would never tell any of my POTS pals NOT to get pregnant- I thin it's worth every hardship and every glowing moment...but it's as individual as we are, and it is indeed unpredictable. There may never be any clear cut answers until more research is done by the medical community on pregnancy and how it relates to dysautonomia, and until then we can only go by what others have experienced and hope for the best for ourselves I definitely felt like I was "winging it' during my pregnancy with Ethan because I had no research, had not yet found this website or met anyone else with POTS, and only had the opinion of my very supportive doctor. I am just thankful everything turned out okay

[Michelle Sawicki]

Just want to remind everyone that we are here to support one another. Please try to keep posts positive and supportive.

Thanks,

Michelle