Pregnancy Induced Pots

[Noonoo]

Hi all,

I there anyone out there who has pregnancy induced pots who has had subsequent pregnancies...? I developed pots 12 weeks post partum out of nowhere last year. I'm by no means back to normal and I'm symptomatic pretty much all the time but I can function, work again in a way that I couldn't last year.

The pangs of wanting another child are becoming very strong with so many around me having more children....can anyone shed light on how further pregnancies affected them during and after delivery? I'm starting to grieve for the future I wanted and the pain of not being able to give my little one a sibling is becoming intense. I feel I can prepare myself for a rough ride but I also have my daughter to think of...I don't want to leave her without a mum who can care for her.

Any thoughts would be much appreciated xx

[ramakentesh]

Its a good question. Studies suggest people with POTs can have successful pregnancies with it without significant worsening of symptoms, but if yours arrived postpart. then it might be worth treading with caution.

[MomtoGiuliana]

I developed POTS during pregnancy and was disabled for nearly a year (partly b/c it took so long to get a diagnosis).

I think you should explore this w a doctor/ob-gyn, particularly if you are using medications or there are meds you might need to use during pregnancy. It is true that studies indicate that patients with POTS can have successful pregnancies. IMO, I think if you had any life-threatening complications with pregnancy that has to be evaluated. I did have life-threatening situation along w POTS, so I chose not to have another child. I do know first hand how painful this is. But I was also terrified of more disability and another life-threatening situation, and the impact that would or could have on my first child/family.

I guess the other consideration is just the practicality of what you will do if you become disabled due to POTS, for care of yourself and your child/children. Also, in my personal situation, I bring in more income and benefits than my husband has (for years) and not working again for another year, potentially, would have been a serious financial problem for my family.

I think there may be some other members here who developed POTS during pregnancy and had subsequent pregnancies, hopefully someone else will answer w her experiences.

[Noonoo]

Thank you for your replies! I've been weaning off drugs- down from 6 tablets to just 2 per day so I would hope in the future to be off completely, especially if I can continue to increase exercise. My pregnancy was great- worked full time until 39 weeks...it was just 12 weeks after delivery that I came crashing down. There was never a life threatening situation and I had a fairly tough induction and forceps delivery which I coped well with. I'm sorry to hear that you had such a difficult time...it's really not what we dream of when we plan a family!

Each doctor I've seems just says go right ahead but it's not their lives, is it? Sometimes I feel medics can be flippant because they can't give you an answer rooted in any evidence. I hope one day I'm brave enough to take the plunge...fingers crossed.

[kayjay]

I had another child but I was not diagnosed at the time. It wasn't a dilemma for that reason.

I can encourage you perhaps by saying my second pregnancy was much easier. I had my first episodes of high blood pressure during my first pregnancy and none during my second.

I can say that the fact you have a diagnosis can be a huge help to keep you and the baby safe. I had to be induced early because of my high blood pressure and of course my blood pressure didn't return to normal after delivery. With my second child the pregnancy was better but my blood pressure plummeted during delivery. I had the sensation that I was going to die and a load of nurses and doctors rushed into my room. I realize now my blood pressure probably plummeted.

Life does always have risks and we can't see into the future but praise God, my children are now healthy teenagers. They were 20 months apart and have a very close friendship.

Best wishes whatever you choose. I do know that information/diagnosis before my children were born would have helped me be healthier in my 20's. Although my dysautonomia reared it's ugly head during my first pregnancy, I don't believe that it made my long term prognosis worse.

[sideofsalt]

I'm in the same boat as you Noonoo - I am considering if having a child is a possibility. Currently, my doctors say POTS is not a limiting factor to becoming pregnant but we honestly don't know how our bodies will react once pregnant. There's no way to predict. (I too developed POTS quite a while after my first child when I stopped nursing). Best of luck if you head down that path!

[Noonoo]

Sideofsalt, I've heard so many stories of breastfeeding and pots being hormonal.lying triggered. Mine came on after 12 weeks when I was exclusively bf but my periods had returned 3 weeks prior to my onset. I weaned very slowly, dropping one feed a month over a three month period between 7 and 10 months pp and I was absolutely fine in terms of there being no worsening of symptoms. Did you stop quickly? I've read very mixed stories about the best strategy to take. I just hope one day it's a dilemma I face. I'm 36 and feel like time isn't on my side either. Fingers crossed for us both!

[sideofsalt]

Noonoo, I weaned gradually. Then my hormone fluctuations became more and more extreme over the course of many months - PMS, migraine - before my first POTS episodes. If you can point me to any resources that discuss breastfeeding and POTS, I would love to learn more!

MomtoGiuliana raises a good point about the practicality of disability due to POTS and I have been thinking about how I would go about getting help to reduce the inevitable sleep deprivation of the early months and what I would need to do in a worst case scenario.

kJay's experience is very encouraging! My next time around, I will be better prepared to address my pregnancy in a more healthy manner, especially in regards to nutrition.

[Noonoo]

Side of salt, all my info came from mums on a Facebook group who have been through it. My doctor also advised me to feed as long as I wanted and then wean slowly. It keeps our volume up but if we stop suddenly it seems to make symptoms worse. It's interesting that you stopped slowly but still experienced an impact. If I were lucky enough to reach the point of having another child, I would definitely combination feed, that I know already. I think it's the only way to have rest as I found expressing just as exhausting. I'll be thinking of you - let's hope things go our way x

[MomtoGiuliana]

I seem to have a version of POTS different from most. I felt worst while pregnant (3rd trimester was the worst) and worst of all post partum (probably partly b/c of C-section, loss of blood (had blood transfusion), and also of course sleep deprivation). I stopped bf-ing suddenly somewhere between 3 and 4 months when I was finally diagnosed w POTS and started taking meds that at the time I was concerned were not good to take w bf-ing. I got conflicting advice from doctors and took the advice of the pediatrician and stopped. Stopping suddenly did not make me feel worse (except I remember for the first time feeling depressed--maybe b/c of hormonal changes but also b/c I felt sad about stopping). I felt better within weeks--meaning I was housebound but not so much bed bound. I remained pretty much disabled due to POTS for months after.

[sideofsalt]

I seem to have a version of POTS different from most. I felt worst while pregnant (3rd trimester was the worst) and worst of all post partum (probably partly b/c of C-section, loss of blood (had blood transfusion), and also of course sleep deprivation). I stopped bf-ing suddenly somewhere between 3 and 4 months when I was finally diagnosed w POTS and started taking meds that at the time I was concerned were not good to take w bf-ing. I got conflicting advice from doctors and took the advice of the pediatrician and stopped. Stopping suddenly did not make me feel worse (except I remember for the first time feeling depressed--maybe b/c of hormonal changes but also b/c I felt sad about stopping). I felt better within weeks--meaning I was housebound but not so much bed bound. I remained pretty much disabled due to POTS for months after.

May I ask what symptoms you experienced in your 3rd trimester? In my 2nd trimester, I felt a great deal of adrenaline, but it was rarely over the top or unpleasant. I had a lot of energy, so much energy. There were a few times when I felt mildly anxious, but work was stressful and my family was moving houses. It was a stressful time and also an exciting time. Having POTS today, I have a different relationship with adrenaline and now look back at that time as perhaps a pre-cursor to the POTS I would later develop. My blood pressure was always good during the pregnancy though and aside from a recurrent sinus/ear infection 1st trimester (maybe setting the stage for the immune-related POTS), there were no other clues for POTS.

[sideofsalt]

Side of salt, all my info came from mums on a Facebook group who have been through it. My doctor also advised me to feed as long as I wanted and then wean slowly. It keeps our volume up but if we stop suddenly it seems to make symptoms worse. It's interesting that you stopped slowly but still experienced an impact. If I were lucky enough to reach the point of having another child, I would definitely combination feed, that I know already. I think it's the only way to have rest as I found expressing just as exhausting. I'll be thinking of you - let's hope things go our way x

Yes, the exhaustion of breastfeeding alone is concerning to me as well! What do you mean by "combination feeding"?

[MomtoGiuliana]

Side of salt--I had all the classic POTS symptoms by 3rd trimester. tachycardia, significant tachycardia on standing, tachycardia even worse right after meals, PVCs, utter exhaustion, adrenaline surges, muscle weakness and pains, difficulty with temperature regulation, heat intolerance, dizziness, nausea (and some vomiting). My blood pressure remained quite stable throughout, until the last few days of my pregnancy when it suddenly rose. Which is what led likely to complications during labor. Anyway, I was unable to work during the last two months of pregnancy. I mostly had to lie down b/c I would be dizzy and weak on standing. Sadly I had no diagnosis... I knew something was wrong but kept being told by doctors this could be normal during pregnancy. If I could have been diagnosed and treated I think I might have had a better experience. At one point I was told I was dehydrated (which made no sense at the time) and was given IV saline. I went from feeling horrible to feeling quite normal and that lasted for several days. So I think things could have been done to improve my symptoms. Just unfortunately no one understood what was going on. Fortunately I had a healthy baby at the end of it all.

[Noonoo]

Sideofsalt, if I had another I would breastfeed but not exclusively so use formula as well. Many of my friend did it after a few weeks when their supply settled as a way of taking a break or getting a few extra hours sleep. I look back on the first few months and how tough they were when, in theory, I was still well....I think this would be the only way I would manage. It's interesting what you say about adrenaline because I didn't stop through pregnancy and was up ladders the day before my induction. I passed it all off as nesting but I look back and I was totally wired, then exhausted every night. These days I'd love that energy back!

[sideofsalt]

MomtoGiuliana, that is one frustrating thing about being pregnant - that almost every symptom is chalked up to the pregnancy and not further addressed. I have to admit, this is one of my main concerns about going down that road with POTS. I'm so happy that you had a healthy baby. How did your condition evolve after the first year of being disabled if you don't mind sharing?

Noonoo, I too wish I had that energy again! It was energy I could actually use! The combination feeding idea sounds like a great way to ensure some sleep. But to keep up with the demand, I wonder if that means more pumping? Hmmm.

[MomtoGiuliana]

sideofsalt Yes exactly right about symptoms during pregnancy! It was very frustrating. I was disabled for about a year (home or bed bound). After that I went back to work part time. I slowly improved (although had and still can have relapses of significant symptoms). I work full time now and although bothered by symptoms, they are now just that, a bother, not disabling, typically. I still take a beta blocker.

Regarding combination feeding the only question I would have is how that might affect milk supply if you are not feeding/pumping as regularly, especially in the early months when getting supply established. Not anything I know anything about, but a question I would have.

[Annaliese]

During my first pregnancy I developed mild Dysautonomia but at the time I just thought it was chronic fatigue. It took me 3 years to work up the courage for a second pregnancy. During my second pregnancy I became extremely unwell and was hospitalised with hideous symptoms. I was dx with Dysautonomia, was bedridden and could not look after my children. It was disastrous and I was utterly miserable (and so was my partner). My sister looked after my kids for three years and my partner had to take 9 months off work. 4 years on and I have I improved, but I still need help looking after my kids and cannot work. I still spend a lot of time in bed. I know of another woman who developed Dysautonomia during her first pregnancy (but was not diagnosed), then went ahead and had a second and she ended up in the same boat as me. Whether pregnancy causes worsening of symptoms depends on your cause. I'd say if pregnancy caused you to get Dysautonomia in the first place, think very carefully about risking it a second time. Pregnancy causing Dysautonomia is rare so I'm not sure how many (if any) of those patients were included in the study that Ramakentesh mentioned. As a side note, both myself and the other woman have responded to antibiotics. Pregnancy suppresses the immune system so a latent infection may have been allowed to surface.