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dysautonomia and pregnancy
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dysautonomia and pregnancy

I was diagnosed with dysautonomia almost a year ago. I recently found out I am pregnant. I am 10 weeks. My doctor has told me that I will start feeling better in the second trimester. I am just wondering if anyone else has/is pregnant and how your pregnancy and delivery went.
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875426_tn?1325532016
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612876_tn?1355518095
Hi. Welcome to our community!

Like LivingInHope, the first thing I'm going to do is show you our archived conversations on pregnancy from here in the dysautonomia forum:

http://www.medhelp.org/forums/search/266?utf8=%26%23x2713%3B&query=pregnancy

As you can see, it's something that is brought up routinely, and our conversations about it have evolved over time as more research has come to our attention and members have come and gone who have had personal experience to share. I will caution you to look at the dates on the threads you read in the archive, and be aware that most of those are old "dead" threads which are essentially past their expiration date. I would advise you not to reply on any discussion older than 6 months, as the people involved may no longer be active or the information they shared about themselves may no longer be current/accurate. Rather, if you see someone you want to reach out to because of a comment they made, you have the option of clicking on their username and sending them a private message.

I will contact my co-community leader who has experience with this and ask her to stop and chime in on this thread if she's well enough. I'm pre-planning a pregnancy myself at the moment, so for right now I can at least tell you what my specialists are advising me in this phase. (I have had dysautonomia for 6+ years now.) In terms of pre-planning, my biggest focus is on tapering off medications that are not safe for a fetus; I don't know if you take any meds for your dysautonomia or any related conditions (gastroparesis, MCAD, Sjogren's, EDS, etc.), but of course it's critical to consult with your OB/GYN and the docs who prescribe your meds about what is safe during pregnancy (and breastfeeding if you're going to do that) and how to safely taper off anything you need to stop taking.

Another consideration for me, which I don't know how much this may be an issue for you, was looking at my diet. I have severe gastroparesis and dysmotility, and there's some question of a possible metabolic disorder; it is critical that I eat properly to get the right nutrients for the fetus considering my GI issues. In addition, I've been a pescetarian since age 9 (a vegetarian that eats fish but no other meat); because of my metabolic issues and high protein demands, I've opted to eat meat during my pregnancy for the health of my child. I also have been instructed by my dietician about which types of fish are safe to eat. There are some fish that are too high in mercury to be safe to eat during pregnancy:

http://www.*****************.org/pregnancyhealth/fishmercury.htm

On the other hand, there is research that says children of women who ate fish during pregnancy have higher IQs so I don't intend to avoid it altogether by any means.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(07)60277-3/abstract

To battle my dysautonomia symptoms in the absence of my dysautonomia meds, my autonomic neurologist at Cleveland Clinic advised me to get back to the basics. As I'm tapering off meds, I'm focusing more and more on what I can control on the outside: compression stockings, salt loading, fluid loading, countermaneuvers, keeping up with exercise that I can tolerate, and using my DME "helps." The durable medical equipment I use at this point is pretty extensive, from a rollator walker and prescription helmet to a power wheelchar, from a shower chair and grab bars to a grab bar attached to the bed; next due for delivery is a new shower chair with tilt and recline to avoid fainting in the shower. About compression stockings: if you prefer waist-high over thigh-highs, they make ones specifically for pregnant women so get a new prescription so you're not squeezing your belly. Even with the thigh-highs, your measurements may change during pregnancy so it might be worth going back to the fitter to get a full set of measurements (what they do for a pair of custom compression hose) to see if you're in the wrong size and need a new Rx; I can personally attest to the wonders of a custom-fitted pair.

I've been told that I'll be meeting with both high-risk obstetrics and the high-risk anesthesiology people once I'm pregnant so that we have a full team on board and a plan in place (even though my fiance and I ... well, husband by then, LOL ... have chosen to have my normal OB/GYN deliver the baby unless there are extenuating circumstances). Those are things you may want to consider, depending on how involved your dysautonomia is and how you feel about your pregnancy and delivery.

I'm currently seeing genetics for testing on myself and I did ask if I should go to the pre-pregnancy genetics counseling clinic at my hospital. The advice I've been given at this point is that unless advised otherwise per results of my genetic testing, there is really no point to seeing them now. It's something you might want to think about or talk to your doctor about, more so if you have any genetic diagnoses. (It's hard to know what's relevant to you not knowing the cause of your dysautonomia.)

If you have other specific questions, I'll be happy to try to answer them. Best,
Heiferly.
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726204_tn?1285879778
Hi and congratulations on your pregnancy :) you are nearly into your second trimester and as your doctor advises you may start to feel better during this time, many women do due to the increased blood volume.   Heiferly has given you some great advice and pointers in her post above and has highlighted several relevant issues x

I have 3 children, born in 2002, 2006 and 2008.  Although I never got a diagnosis until 2009 when my pots became severe my doctors now believe this came after my first child was born.  For me each pregnancy was different and the extent of my symptoms whilst carrying were too.  During my last pregnancy my symptoms were more prominent but at the time we were not aware of the cause.  My pregnancy itself was straightforward, this condition never caused no problems to my baby.  I was on no meds so I never had that worry.  I did suffer more fatigue, tachycardia etc but tried to pace myself.  Cool showers were a blessing to me!

My 1st child was born via an emergency c-section and my other 2 were born via elective c-sections.  These were pretty straightforward and I never had no severe complications due to my health.  During my last section my bp dropped a few times and I was close to passing out on the table, but as quick as this happened I was given a medication intravenously and this combatted it quickly.  This happens to 'healthy' people during surgery when a spinal block has been used so they are more than ready for it.  

It is important that your drs are knowledgeable about your condition and how it effects you.  I was under a high risk consultant for my last 2, but this was due to my previous c-section rather than dysautonomia.  

I did find I was unwell after my 1st and last delivery, but after my 2nd I felt really great.  But this did not stop me enjoying my new bundle.  

I have spoken with many women over the past few years whom have been oregnant/delivered whilst having dysautonomia and the majority of them have had enjoyable pregnancies and 'normal' births.  Personally, I would do it all again.  Once your baby is in your arms nothing else matters, they are do worth it xx
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612876_tn?1355518095
Thanks dear for answering my "page." You left out one of the most important pieces of info about your babies, though!

Seely, she has 3 positively ADORABLE angels!! :-)  I wish I could swim across the pond to squeeze their cheeks!  :-p

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875426_tn?1325532016
How are you doing?  I have someone I've been communicating with who has dysautonomia and Ehlers Danlos Syndrome and thought of you!  Please drop me a line!
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4703993_tn?1379771988
My electrophysiologist told me to avoid pregnancy at all costs.  I hope this is temporary because I am only 26 .. I have a 2 1/2 year old daughter and would love to have 1 more child... I am only 2 months diagnosed, but they seem to think my first pregnancy caused the POTS in the first place.  I wish you the best of luck.. I have read a lot about this issue and many women with POTS have had wonderful pregnancy's with healthy babies, but struggles after pregnancy with the POTS..  I'm sure all will be fine - I would personally see a high risk OBGYN just so you have the best of care!  Feel well and good luck again =)
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Avatar_f_tn
Hi, I had my first baby girl on june 4 2007. I had complications with her starting with feeling very weak and tired. At 21 weeks I started bleeding and immediately went to see my doctor. He then admitted me in to the hospital and I had no idea what was going on... turns out she was trying to come early. The next morning I had surgery for a surcloge and was fine throughout the rest of the pregnancy. She was a healthy baby girl and I did have an epidural but no c section. After she was born I was diagnosed with POTS. Now after 7 years I have been thinking about having a baby but scared of not knowing the risks especially after almost losing my baby girl. I was wondering if anyone eles has had this experience and what advice you might could give me.
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612876_tn?1355518095
According to the most up-to-date research on POTS, women with POTS have pregnancies with no higher risk than women without POTS, which is great news! We also have a written protocol for best practice delivery of babies from a POTS mommy, written by the dysautonomia clinic at Mayo. You should ask your doctor to consult this document so they can plan your delivery accordingly.

It is important that you realize that pregnancy has variable impact on POTS, such that some women will have worsening of symptoms after childbirth, some will have no change, and a small percentage will have total remission (which of course would be awesome!)

One other thing to be aware of is that, as your blood volume increases during pregnancy, and your abdomen becomes increasingly compressed throughout the second and third trimesters, it is not uncommon to have temporary improvement of your dysautonomia symptoms. However, some symptoms—such as nausea or "morning" sickness—may hit harder because you're getting hit by the pregnancy hormones on top of the autonomic dysfunction. It is wise when family planning to at least keep in the back of your mind that a small percentage of women with POTS or other forms of dysautonomia end up needing to stay on bedrest for 3 months or more of their pregnancy due to exacerbation of symptoms and risk of falls. If this isn't a good time in your life to be on your back for months (say, if you have other young children under foot that you need to care for and don't have any friends or family who could pitch in for months at a time), you may wish to take that in consideration when considering whether this is the right time to have a child.

Please let me know any other questions you have. I'm so glad your first pregnancy went well, and will be excited to hear updates from you.  Cheers, H.
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Avatar_f_tn
Hi it is me again... I am just so lost I can't understand why all of a sudden I feel so bad. My heart rate stays in the hundreds whether in sitti.g standing or laying down, I get dizzy and fluttery like feelings in my head and chest area. I have scoliosis which idk if its causing the severe back pain or not. Also I have sever joint pains all over my body. Every single day I have a fever and I just don't understand whats going on. The doctor tested my blood for many things but the only thing they found was that my vitamin D level was low and that my thyroid is all over the place but cannot treat it right now. Im in so much pain that I recently had to take of work and can't do hardly anything I don't even want to get out of bed... and when I do lay down I toss and turn and poor sweat and then I am bck up at 4 in the morning. Does anyone have any insight or experience to what I am going through... please help! I feel like I am going crazy!!! Also they undiagnosed me with dysautinomia but can't find the underlying cause.
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Avatar_f_tn
And thank you so mu h for the info itvwas very helpful!!!
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Avatar_f_tn
Sorry diagnosed* can't text to shaky lol...
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