Pregnancy and POTS

[lalalisa]

Hello again!

My husband and I hope to have children sometime in the near future (after I get over this mono infection!)

Have any of you gone through pregnancy with POTS?

Any advice or words of wisdom?

I am looking for any input concerning going off of meds, how you feel during/after pregnancy, etc.

Thanks again!

Lisa

[Ling]

Dear Lisa

I have been preparing my body for pregnancy for the last few months. I have been advised not to have children due to the pots and all our wonderful side effects. I become worried last year and I went and saw a gyny. He advised me to start my family as soon as possible. I am presently 25 years old and he says I can’t wait until my 30. By the time I turn 30 I must be finished with all my children. My doctor and I have been working every month on preparing my body. She has been very honest and straightforward with me. She has told me it is not going to be a easy pregnancy and that I will probably feel much worst than I normally do. I will not be able to give normal birth and cant get an epidural. I will have to go under anaesthetics and have a caesarean. I have educated my self well on this topic and will be prepared when I can start trying in April. I will be 26 by then and I can't wait I am very excited. I am use to feeling terrible so I am sure it will be okay. Any ways I am not going to let Pots take away my opportunity to become a mother.

I wish someone had told me sooner that I needed to start my family as soon as possible. My health is only gettimg worst and I only found out about this a few months ago. Please don’t wait to start your family; with our bodies you never know what is next.

I have to mention between the gyny, doctor and cardiologist it is going to be teamwork during the pregnancy. I trust my doctor completely and she knows it is my wish to become a mom. Therefore even thou she has advised me not to she will support me all the way. Most people have not got a clue what pots is.

[MomtoGiuliana]

I think every woman with POTS has a unique experience--and that includes the experience of pregnancy. I think part of the reason is that POTS is triggered by different things in different people. For me, the hormones of pregnancy, etc. seemed to trigger POTS into full swing. EthansMom may fill you in on her experience that was far better than mine (she is 22 and I am 35, which may have also made a difference). But, I have also read that POTS patients often feel quite well during pregnancy. This was not the case for me. I was fine to ok until the third trimester. I had never been diagnosed with POTS, only autoimmune thyroiditis, which I was under close care for. Anyway, you can read my story on this website -- "Katherine's story", which describes my pregnancy and post partum POTS experience. I think if I had been diagnosed properly, my experience would have been a lot better, as I would have been under the care of someone who could help me manage it. Instead, doctors just shook their heads and went on the the next patient, or chided me for not getting enough exercise. My Ob/gyn had never heard of POTS (now she has), although she was quite certain she was correct in her diagnosis of post partum depression. On the positive side, my baby and I got through it, she is perfectly healthy, and I was able to breastfeed her for 4 months. I definitely will not get pregnant again. We may try to adopt a second child at some point.

I know how much many of us want our own children (the desire is hard-wired into us after all!), but don't forget that adoption, although a difficult process, is a wonderful alternative, and there are so many children on this planet who need a caring, loving home.

Katherine

[ethansmom]

Katherine, I completely love and support your plans for adoption, I think that is great, and in light of your experience with pregnancy, I think I would go the same route. I also agree that every woman is completely unique in her experience with pregnancy.

My personal experience being pregnant was a good one. I had reached a stable point about a month before becoming pregnant, which I'm sure helped a lot, but I really felt better the farther along I went. By the 9th month, I was 80 lbs heavier, full of water retention, had higher blood pressure, but was feeling pretty good. I owe a lot to my wonderful midwife and doctor, who worked closely and monitored me and the baby every step of the way- and helped me get through a drug-free delivery, which I absolutely KNOW sped up my postpartum recovery.

I honestly have to say that the motherhood part has been harder for me, but it gets easier as Ethan gets older, and the physical demands on me get less and less. I am exhausted all the time, but I have good days and bad. I've been able to nurse him for this whole year, and we've overcome a lot (he's 13 months now). He is my little buddy, and I would not deter anyone from having a baby just because they have POTS. It is a risk that needs to be taken if one is to find out how their experience will be. I'm not sure that we will have any more children, only because it is so physically demanding, and the recovery from pregnancy is so hard on the body. I may reconsider when he is 3 or 4 years old, because I so badly want more than one child.

I wish you luck in your venture to start a family. It is a fantastic experience to watch something that you create blossom into a little person- I've had a lot of experiences in my life, but nothing quite like this Best if luck!!

[EarthMother]

As you have heard above, each person is different and each pregnancy may be different for the same person. I have three children and each pregnancy had it's own unique challanges and delights.

Best advice ... find a team of GOOD doctors that you can talk with openly about your condition and your desires. For instance, I don't like to take a lot of meds and I really wanted to do things as "natural" as possible at the hospital. I was fortunate to find an OB that even though my condition was labeled "high risk" by the hospital, he made sure we could wheel in any equipment needed into a birthing room that was small and cozy rather than be forced to move me into the O.R. (which of course was still right across the hall.)

I also opted to nurse all three of my children -- once again finding a team of doctors who understand my preferences was important. Sometimes I would have to take a medication ... and while many uniformed physicians find it easier to say "wean the baby" I would go back and do my research to find out if and how much of the medicine was excreeted in the breast milk. Sometimes it was a matter of regulating a dose so that I didn't nurse right afterwards (possible when you are nursing a toddler, not practical for newborns.) The Le Leche League was a big help in finding a network of doctors and pediatricians who were supportive of my efforts.

Good luck to you on your adventure!

EM

[MomtoGiuliana]

EarthMother

That is wonderful that you were able to find doctors responsive to your desires, who also understood what you needed medically. As you say, that is probably essential for women with any medical condition. I live in a rural area, and concepts like natural childbirth, etc. are not widely appreciated. Overall, I have not been thrilled with the quality of medical care here. My doctor was great at slicing me open when my health reached a crisis point, but horrible at helping identify my problems, listen to my concerns or desires, and try to avoid what happened during labor.

I was devastated when I stopped breastfeeding. It was almost worse than being sick with POTS (and I was very sick). My cardiologist told me it was safe to continue to breastfeed Giuliana while I took prozac and pindolol (beta blocker) but her pediatrician said no. I didn't want to risk her health, so I did what the pediatrician said, and I weaned her. It was so hard for both of us. Breastfeeding was the one thing going right during our post partum period (besides the fact that she was a beautiful, happy and healthy child!). She thrived regardless, on formula, and I am glad that she at least got 4 months of nursing. Probably stopping nursing restored my health faster, as well, even tho I would gladly have given up restored health to continue to breastfeed her, as insane as that may sound.

Yes, being a mother is an adventure--like no other. It is wonderful, just exactly how EthansMom describes! It is the hardest job you will ever love.

[lalalisa]

You all are a wealth of info! Thanks!!

If anyone else has anything to add please feel free!

Are you guys of Midodrine or anything similar? How was it going off of your meds?

Ling, I was very interested in your response since you are in the process of getting ready for pregnancy. I was wondering if you would be interested in expounding on this process? What type of things does your dr. suggest? Why a Caesarian section and also no epidurals? I guess the caesarian makes since because I've often wondered if I would pass out during labor!!! Thanks for any input! Oh, also, why did your dr. suggest to have kids ASAP?

By the way, were the rest of you worried about passing out during labor? What steps did you take to get ready for pregnancy?

Were most of you on bed rest during your pregnancies?

Thanks again to everyone, this has been so helpful!

Lisa

[MomtoGiuliana]

I was forced into bedrest by my mysterious condition for several weeks (around the beginning of September '02. My daughter was born, 2 days after her due date, the end of Oct '02). My doctor never put me on bedrest, but b/c I was so dizzy and had these episodes of tachycardia she told me to stop working and driving around that same time.

Yes, I was worried about passing out during labor--or my blood pressure going too high, since I knew my blood pressure was all over the place. (For some reason, this never concerned my ob-gyn). And of course, what happened was that my blood pressure went through the roof after two hours of active labor.

Since I was not diagnosed with POTS prior to pregnancy, I was not on any medication, nor did I have any symptoms in the year or so before pregnancy. I felt absolutely great and healthy when my pregnancy started. Prior to that, I had had POTS symptoms, but it was never diagnosed.

Hopefully your POTS doctor has experience in seeing POTS patients through pregnancy and will advise and guide you. An understanding ob-gyn will be very helpful, too. I think it is very difficult for anyone to predict how pregnancy (and post partum) may affect you and this condition. It's going to be somewhat different for everyone probably. In general, what I have read is that for many women with POTS, pregnancy eases their symptoms. I hope that will be the case for you. Good luck and let us know how things go.

Katherine

[scamelo]

I would never discourage anyone from the joy of having kids ( I have 3).

Mine are 13, 11 and 7, however I have been more emotional these last few months when my symptoms started because I can't do alot with them.

I was always running with them to Girl Scouts, gymnastic, dance, basketball etc.

I was always helping with functions, room mom and all.

Now I am just happy to take them and pick them up from school.

I know the pregnancy might be hard, but its emotionally hard to not be able to do things with them like you would like.

[tinksflight]

Hello...This is my first post ..Just so you all know I've been here for months.Iwas diagnosed w/ pots right around the time I found out that I was expecting my last baby..Which was born in November. I was sick for several mos. prior to the pregnancy and was diagnosed w/ everything else but pots..

I had to search the east coast to find anyone that had any idea as to what in the **** was going on with me...I am a mother of now 9 beautiful children and have always lived a healthy active life...I was, as I'm sure you all were "crushed"...

I have a degree in nursing and 2 yrs prior to pots I had decided to go into emergancy care..so I started training to be an EMT..I completed this 2 mos before any of these symptoms ever started..

But just to help you feel a little more at ease with what you are going through,

Don't be afraid of what you are about to experience...It is ok to be concerned...

My pregnancy was just a little worse in the early stages than it was in the last trimester...I had alot more tachycardia and digestion problems...The feeling of not being able to breath or the maybe it was just the constant chest pains that scared me so badly...I had visual disturbances and many ...many other symptoms...The thing that bothered me the most was the constant fatigue..I just felt totally drained..The only medication I was taking was the florinef..which is a joke...And Klonopin..Which makes any joke funny...!

I was able to stop all meds by my 5th month and started feeling better each week.

As the pregnancy progressed I noted that the symptoms were very mild..So I had a life again ...And I felt as good as I had before this pots came about..

I had an epidural...I was kept very hydrated...monitered by the team that was assigned to me and had an outstanding delivery after 9 hours of labor..

My son is now 2 mos. old...My symptoms are still so mild on most days I forget that I even have pots...I feel the tachycardia...I have some slight lightheadedness

and pooling in my lower limbs...

I am greatful for every day that I have,,My son has been my haven from pots..I am so thankful for him...And so blessed to have him ...

I am not taking any meds at this time, just 2 multi vitamins, an extra iron tab.and drinking 2 liters of water each day..I have replaced my table salt w/ celtic sea salt and find it to be more helpful..

I Wish you the best...I feel very confident in saying that, you know your body better than anyone ...And when it comes to something like pots..where all of the answers are missing...You need a Dr. you can trust...And when you want to add a pregnancy to the pots...

You need to know that there are others out there who have survived it and have the most Awsome stories to share..