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For those of you who have POTS caused by postpartum my heart goes out to you. Having a new baby and dealing with new health issues all at once must have been devestating. I don't know my cause, were still trying to figure it out. But I did get autonomic neuropathy (POTS) when my son was 5 months. Before that I was fine. Anyways my question is did you have POTS symptoms before you were pregnant or was it a sudden thing? Does anyone know what caused it since it was postpartum does that mean it was the hormones or the stress the body was under during delivery???? If this information is unknown like most of our situations don't get offend that I'm asking I was just thinking of my own family and if I can recover from this we would like to add to our family in 4 or 5 years and I was concerned if I did recover (I hope and pray) would I be more prone to postpartum POTS. Also are your symptoms going to go away or is it unknown like everyone else???

Thanks for letting me be nosey

Dayna

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Dayna,

I can't say whether you will be more at risk postpartum next time or not. I can tell you my experience.

I developed POTS very suddenly, like over the course of a day or two. It occurred four days postpartum. I had preeclampsia and I believe that the two are somehow related, although I don't quite know how -- maybe an autoimmune connection is what one of my doctors thinks. I became short of breath for no apparent reason, then realized my heart was going like 140 while standing, but then going back to normal when I sat down. It was all very strange and I went through a couple months of doctors shaking their heads at me and telling me every test was normal.

I was put on a beta blocker to slow the heart rate. But I proceeded to lose all of my pregnancy weight, plus another 20 pounds, in about three months. I felt like I was being injected with adrenaline, and was having muscle wasting, twitching, dry mouth and other bizarre symptoms. I still am having these problems and still don't quite know if I just have POTS or if there's more to be figured out.

There are many unknowns when it comes to an illness like this. I take each day as it comes and try not to think too far ahead. I want another child but am waiting until I feel my health is more stable. Even though no doctor has told me NOT to have another child, I feel that doing so, when I appear to have muscle wasting, tachycardia and shortness of breath that is inexplicable, would be irresponsible and unfair to my daughter.

I don't know if it's the sudden cardiovascular changes that follow childbirth, the stress of having a baby or what that brings on POTS. Maybe it's both.

Amy

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Hi

I do not think that anyone knows why POTS is worsened during or after pregnancy for some. I developed POTS during the third trimester of my first pregnancy, 9 years ago. In retrospect, I had fainted a few times as a teenager at the sight of blood. Before pregnancy I also would feel dizzy if I had to stand for more than an hour in one spot. However, no disability whatsoever before pregnancy occured. I could work for 36 hours straight in the good old days. After my first pregnancy the POTS seemed to resolve after about 3 months.

My husband and I finally decided to have a second child. POTS came back tons worse, and now it won't go away. My second child is nearly 4 years old.

Dr. Low tells me that POTS usually gets better during pregnancy. My previous cardiologist told me that POTS usually goes away after pregnancy.

The best thing that ever happened to me was the gift of my children. The worst thing that has ever happened to me has been POTS. Both arose out of pregnancy. I wish you the best if you and your husband decide to have another child.

Karyn

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My experience was different with each of my three children ... but I can say without a doubt that nursing all of them DID NOT make my symptoms worse. I say this because I know the first thing most doctors want you to do is wean our children so we can take lot's of new drugs. What happens then to some of us is we are really tired, sick with POTS and now getting up several times a night to walk downstairs, fix a bottle and then trudge off into the next room and sit up and feed out baby.

Ok, that's my rant -- kind of out of the blue.

Good luck finding answers to help you and your baby through this healing journey.

EM

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Thanks for your replies. I have no intentions on having more children anytime soon. :lol: There's not much action going on in this pots hole but I was just thinking about my future with the hopefullness of health. I also have three wonderful children and I was asking because they are going through alot and I would never put their happiness at risk if I have control over the situation. I guess we will have to see if the future brings health... :)

Dayna :angry:

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My POTS began full-force early in the 3rd trimester in 2002 (first pregnancy). I had to stop working at 8 months. I was even sicker post partum (probably b/c I had a c-section and huge blood loss). I finally got diagnosed several months later.

Today I am fine, with only mild symptoms--as long as I stay on the ssri. I have tried to wean twice, but the symptoms have come back strongly and so I go back on.

I believe I have had mild POTS/autonomic dysfunction starting 15 years ago. But the symptoms were so mild that I never got a diagnosis.

I think the general medical advice I have heard about pregnancy and POTS is that if you are stable enough to manage without any medications, then pregnancy is not advised against. There are meds that are safe to use starting in the 2nd trimester, if you end up really needing them. It really is best not to take meds in the first trimester, when the fetal development is most vulnerable.

Personally I have chosen not to attempt a second pregnancy. Part of it is my age (now 36) and the combination with POTS. Also, I not only had POTS, but a complicated delivery. To me, all these things add up to a risk I am not willing to take. As calypso says, too, I also feel taking such a risk would be unfair to my daughter. I don't want to risk injuring my long-term health and well-being, for her sake. We may adopt a second child in the future.

One thing I have noticed on this forum (which is by no means a statistically valid survey) is that it seems that POTS patients who experience pregnancy in their 20's fare a lot better than those who experience it in their 30's--as far as how they feel during pregnancy and post partum.

Regardless--the decision is completely yours and you will have to weigh a lot of what-ifs and unknowns, unfortunately, in making your decision in the future. Hopefully even five years from now, this condition will be better understood and easier to manage.

Regarding nursing--I agree with EarthMother--although we know you weren't asking about that. I wish I had not listened to the pediatrician and weaned her when I started low dose prozac. But, that's another story.

Katherine

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My experience with nursing was completely different. I immediately felt much better after I stopped nursing my son after a month. It was more than just sleep deprivation. No matter how much I drank, I think nursing literally sucked the fluids out of my body. I did not stop nursing in order to take medication. However, after I stopped nursing I was able to try midodrine which was a life saver. I am happy and grateful to have the medicines. I shudder at the thought of having this disease in the early 1990's before some of these medicines were available.

Karyn

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I developed POTS prior to becoming pregnant, and did very well during my first pregnancy and for a few months afterwards. I am currently pregnant again (8 months) and the POTS symptoms have been under control for the most part. My biggest problem since my first was born has been the unrelenting exhaustion :) POTS has been much better. However...I was pregnant for 9 months, then still breastfeeding my son when I got pregnant with this baby. So I have not been not pregnant or not nursing for over 3 years!! I had a great doctor and nursing support group who were willing to work with my medications and nursing, so I did not have to stop when my symptoms returned. We tried meds that were safer and in low doses, which my son and myself did fine with. I have heard many women say that nursing helped them because it helps the body return to a pre-pregnant state more slowly...whereas abrupt weaning can cause a dangerous hormonal shift. But I'm sure others have had different experiences. That was off topic but something that I found interesting :)

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The reasons I wish I had continued nursing are that it has so many health benefits for the infant and the bonding was a wonderful thing emotionally for me at an otherwise very difficult time emotionally, b/c my health was so bad. The nursing was going really well for both of us. However, I do agree that the fluid loss is an issue for POTS patients and also nursing does make demands on the body.

I went through some pretty bad depression for the two weeks after weaning. I'm not going to dwell on any regrets--my daughter got 4 full months of nursing which did benefit her. Just that now armed with more understanding, I think I, personally, would have made a different decision.

Katherine

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  • 7 years later...

I know this is a pretty old thread, but I wanted to see how everyone has been doing during all these postpartum years. Have you guys gotten any better? Did you decide against having more children? If not, how was your next pregnancy?

I developed POTS during/after the birth of my firstborn. I'm bedridden now and I really want to know if I can get better and/or recover and have another child in the future. Thanks!

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I'm a postpartum POTS and i'm still not better, maybe a little worse actually. Not to be discouraging. I guess I just haven't found things that help me specifically. I wish, WISH, so bad that I could, I just want to be well enough to drive again and have a few good days here and there.

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I know ethansmom is better and has 3 kids now. However I would not describe her situation as postpartum POTS. She had severe POTS prior to pregnancy starting when a teen and had her first child in her early 20's. Her POTS symptoms were greatly reduced by pregnancy and nursing--not postpartum POTS. I believe she has gotten better over time but I don't think pregnancy was a factor one way or the other in her overall recovery. If she is still on here I think she might chime in but she has not been on the forum for years. calypso did have a 2nd child and I think did better with the 2nd pregnancy. I have not seen her on the forum for years -- at one time she was very active here. The others I don't know more about.

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I developed POTS postpartum after severe hemorrhages and several surgeries. I'm 6 years out and don't post here often - I'd say in some ways I'm better than when I first became ill and others I am worse or not better. Sorry :(

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dsmom, sorry to hear this. What do you mean by " I'm wore in some ways"? What should I expect? Are you functional, can you take care of your kid/s/? I hope you feel better soon!

Katherine, thanks so much for the info!! This is encouraging!

MissTraci, I think it's too early for you. In 5 years you might be one of those ones who disappeared from the forum, blink. You never know. I hope I am one of them too!!!

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  • 5 years later...

I know this is a old topic but maybe someone can point me in the right direction. Doctor suspects POTS for me and I’m only 5 months postpartum and breastfeeding. He’s already discussed wanting to put me on meds but that I would have to stop breastfeeding. I obviously want to feel better so I’m there for all of my children but I didn’t plan on stopping breastfeeding any time soon. What meds were you able to continue breastfeeding with? I’d love to be able to bring up alternatives with both my cardiologist and OB. 

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Hi Alystew-  I am currently 39 weeks pregnant, but have had POTS for a long time.  I've recently been reading more about post-partum POTS.  I read that certain types of anesthesia given during the birth process can deplete B-12 significantly and lead to POTS for some people.  The B-12 levels need to be above 500+, so don't just trust that you are "in range", make sure to take a look at your own bloodwork.  Another major issue with POTS is low ferritin (it also needs to be between 50-80).  Ferritin is a type of iron that can be depleted during birth so I would make sure to have both of those tests and see the results, not just trust that you are "in range".  I think it's really commendable that you are breastfeeding with POTS.  It was very difficult for me.  Unfortunately, my cardiologist and OBs know next to nothing about POTS, so you really have to be your own advocate a lot of the time.  Have you tried Saline IVs?  There is a lot of research showing that they are effective for helping the condition and they are safe with breastfeeding.   You could also check your Vitamin D levels as well.

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My grandmother who had EDS (H) had postpartum POTS based on description from her and my aunt when my father was born in 1928, (she was 41) she had immediate relief when she became pregnant with my Uncle 4 years later, and it did not return after his birth.  Though all through her remaining life she had EDS issues and still lived to be 96.  Of the five children my dad did have life long hypotension and orthostatic hypotension with occasional syncope.  Of my dad's 5 children only myself the oldest and the youngest show signs of minor EDS.   My son#2  has full blown EDS (H) and POTS for most of the last least 15 years.  My dad was raised by his grandmother for his first four years, she also had EDS issues based on his and my aunts descriptions.  I have one first cousin who has minor EDS issues and also one first cousin one time removed.  So in our family POTS did show up postpartum once a long time ago.  I do remember grandma complaining that she was stuck in bed for 4 years and the doctors told her it was her heart! Now we know better.

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