Have Not Been Here In Awhile But Really Needing Some Help

[icesktr189]

My POTS these past couple months have been pretty good. Actually the best i have felt since i was diagnosed last year. But i just found out a week ago that i am 6 weeks pregnant. Now i feel absolutely terrible! I am beyond dizzy, my anxiety has gone through the rough, and i sleep around 14 hours a day. Not to mention the other normal pregnancy symptoms such as morning sickness. Day by day it just keeps getting worse and my cardiologist has taken me off of all my meds exept my salt pills. Ironically my blood pressure has been pretty stable, but my body is definently not handling the new hormones well.

I guess i just want some stories of people who have been through pregnancy with POTS. i hear the second triemester is better, however my OB told me that your blood pressure tends to drop more so i dont see myself feeling any better. Also the prenatals i take make me SOOOOO DIZZY. Literally a half an hour after i take them i can hardly stand. i stopped them for a couple days and feel so much better but i cant quit them forever.. i wonder if anybody else has had this reaction?

i just feel so scared that my POTS is going to be completely horrible for the next 8 months.

[bjt22]

Well.

You might feel really bad for the first trimester. Even "normal" people feel bad. It's true that I've probably had autonomic dysfunction for my entire life, but I can tell you, even before I was diagnosed, those first three months were no picnic. I can remember feeling so bad that the thought of considering future pregnancies was just, well, unthinkable. Feeling the need to sleep 14 hours a day is not that unusual for that stage of pregnancy.

As I said, I was undiagnosed during my pregnancies. The concerns I ran into had little to do with blood pressure being too low. Rather, my blood pressure could spike. My heart rate also went up quite a bit. Again, not unusual during a pregnancy by a "normal" person. If it were me, I'd watch signs that looked as if they could indicate pre-eclampsia. Not sure if what happens to us is true pre-ecpamspia, but I definitely had period during most of my pregnancies in which my blood pressure was very labile. I'm also not convinced that gestational diabetes isn't a side effect of all of this, too. Be sure to get the appropriate testing.

Be prepared for after the pregnancy. I was diagnosed shortly after my last pregnancy after becoming increasingly likely to experience syncope within a few days after the birth.

[icesktr189]

thank you! i dont think i have felt this tired/out of energy since i had my POTS crash last year. My brain fog is horrible though. Dizziness is an all day thing now. i am just praying that the second trimester will be a bit better than now!

[firewatcher]

Dani,

I was undiagnosed and had two successful, uncomplicated pregnancies (notice I did not say uncomplicated deliveries.) It does sound fairly normal for first trimester! I remember those naps so fondly! I got better during my second trimester and was very uncomfortable during the third (not due to POTS, but big babies!) Make sure your OB/GYN knows about POTS and the blood volume/BP issues. Birth and after will be your "big deals;" as long as the docs know they can mitigate any BP spikes or drops during delivery. DON'T PUSH YOURSELF after the baby is here! Enjoy your little bundle and snuggle on the couch as much as you can! Congratulations!

[EarthMother]

Congratulations! I know you're not ready to hear that yet ... so tuck it away until you feel the first ripple in your tummy. That first butterfly kiss sensation from inside your body is simply indescribable!

My first pregnancy was probably the first time Doctors realized there was something going on with my ANS. The orthostatic hypotension was horrific the first tri-mester -- actually it was more like 20 weeks! I was out of work for the first time on short term disability. Could barely get off the couch. And like you ... I was simply terrified that I wasn't going to be able to handle all of the changes my body was facing, let alone a new baby!

But halfway through my first pregnancy everything shifted and I felt less nauseas and much stronger. I was able to return to work and worked right up until the day my daughter was born.

My body had a rough go after delivery. Standing up was once again out of the question. So we arranged my bedroom with everything on the floor. My mattress, snacks, a changing table, diapers ... etc. And I just kept the baby with me in bed. Slept when she slept and nursed in bed with me. Eventually, I regained my strength again about three months after her birth and return back to work. We kept the family bed because it was so easy to do with a nursing baby.

Turns out, for me, the first pregnancy was the most difficult. Probably because I didn't know what to expect. My doctors cautioned me not to put on too much weight -- which was a mistake for me. I needed the extra volume to handle the new functions my body was doing. I was only 110 pounds at the beginning of my first pregnancy -- at 5'5" I was very thin. I think that's why I did better the more weight I put on.

With my next two babies, I made sure my weight was higher (125) at the onset and I was surprised that I didn't feel anything like the first time around. I never missed work, and even post partum felt pretty good. (We kept the family bed for the babies because it worked so well for all of us -- way more sleep, less work, all around.)

Like POTS, pregnancy symptoms can turn on a dime. Hang in there, some relief may be right around the next corner. If not, then its surely around the next bend!

[icesktr189]

thank you so much for your replies! it gives me a ray of hope that i might feel decent during the pregnancy!

So what I have seen the most difficult for POTS and our bodies is the birth and postpardum? What do the doctors usually do different during the births than normal people giving birth?

My OB recomended a C section but i know that has a lot more down/healing time. I told him i wanted to try the vaginal delivery and he said that was okay as long as my blood pressure could stay in a normal range.

Earthmother i totally know how you felt! Im barely along and already feel like the first trimester will never end!

Gatoraide and water are not doing their job like they used to so im pretty bummed about that!

[EarthMother]

All three of my births were very rapid -- like the rest of my autonomic system! Unlike many folks here, I didn't have anything unusual about my deliveries. I made sure that I found a really good OB who wasn't "frightened" by the tachycardia and would be as flexable as possible. We had a wonderful birth plan that we designed together and that he signed that went to the hospital and stayed in my charts so that the nursing staff on duty knew exactly what to expect and how we wanted things to go (and not go).

Having a birthing plan spelled out gives you a chance to talk in detail with your OB about what things might come up and how they might be handled. It has to be VERY flexible, but under the best of circumstances it helps to guide the general direction you hope things might go.

As I said, my deliveries were really quick --- which by no means implies easy. Think of a traditional labor squeezed into one quick rollercoaster ride. When people talk to me about doing lamaze, I tell them I practiced lamaze too, but in the end opted for the yelling and screaming childbirth method. :-) My last baby came so fast, (no one believed me that they should call the Doctor NOW) that the Doctor wasn't even in the room and all of a sudden we had a baby in my bed! Whoosh!

Good luck getting all the information you want to feel confident and the medical tests you need to be reassured. If our POTS has not already taught us about patience and flexibility ... motherhood certainly does.

[worththewords]

I'm in the beginning of my second trimester with my first child so I'm no expert but I can share with you what I've learned so far.

Have you asked your OB to try a different prenatal? I had problems with one and they gave me a bunch of samples of different kinds. I tried them all and then he prescribed me the one I tolerated the best.

I had awful "morning" sickness my first trimester. It lasted pretty much all day long. It started to go away around the end of week 12 for me. I think it is different for everyone though.

Not to alarm you but as soon as my morning sickness eased up and I got into the second trimester my blood pressure did get lower and overall I am feeling worse. My cardiologist is hopeful that the way I am feeling is a response to how sick I was for 2 months. My OB isn't too concerned with my low blood pressure but has advised me to rest as much as possible. Both my OB/cardio have recommended avoiding doing anything that could trigger fainting or falling (standing for too long, being out in the heat, not staying hydrated enough, etc.)

Sleep when you need to sleep! I found myself taking random naps. Drink as much fluids as possible. I went from 5 bottles of water a day to 7 bottles adding in Gatorade and it did make a difference. Just try to listen to your body and hang in there!

I have heard some POTS patients do well in the second trimester and I hope that happens for you!

[Rachel]

Hi Dani,

I'm a little late chiming in on this, but I did want to offer my congratulations. A baby is a precious gift. I hope that things go well for you, and that you can feel well enough soon to enjoy your pregnancy. I'm sorry you've been feeling so badly, and I hope it improves for you soon.

I have been pregnant with POTS. I had a very successful, healthy pregnancy with my son (now 3 years old). I felt better immediately and was able to go off of all my meds. I especially felt good come 4 months along when there was such an increase in blood volume. I am currently pregnant (20 weeks along), but this pregnancy has not been as easy as the one with my son. I was much more fatigued in the first trimester. Now that I'm 4 1/2 months along I am able to sit and stand for longer periods. I love the increase in blood volume!!! Hang on, you'll get there.

As I said, with my son I was able to go off of meds. That was not remotely possible with this pregnancy. You can see in my signature which meds I am on during pregnancy. My cardiologist, my OB, and my high-risk OB approved all of these meds. I did try going off of Midodrine a couple of weeks ago, but it was bad. I definitely still need that, so I'll be staying on it. The other thing that helps me a lot is compression hose. I'm still wearing those daily, although my tummy will be too big for the waist high in another 3 or 4 weeks.

I didn't have the reaction you described with prenatal vitamins. There are definitely some that are harder or easier on my tummy, but they never caused dizziness. I found two over the counter prenatal vitamins that were good and easy on my tummy. Some brands are better than others. I hope you can find one that works for you. Maybe your doctor will have a suggestion.

My blood pressure didn't drop at all in my second or third trimester. In fact, it went up a tiny bit. It was great to have a more stable bp. I think the increase in blood volume helped with this.

When I gave birth to my son, nothing different had to be done for me than they would do for a normal, healthy mom. I tried to go all natural because I wasn't sure what pain meds or an epidural would do. Eventually, though, I had to have an epidural because I desperately needed sleep. It was either have an epidural and get some sleep, or be completely useless once it came time for delivery and have to have a C-section. My body heals very slowly, and I knew that a C-section would not be a good option unless absolutely necessary. So I opted for the epidural. I did just fine with the epidural. It didn't drop my bp at all. Oh, one other thing about delivery. I did have to be given pitocin. My uterus didn't contract very well on its own. The pitocin helped tremendously. This time around, I will get the pitocin and epidural much sooner. That way I'll be able to rest during labor and not be so exhausted come delivery time.

I hope that your first trimester passes quickly for you, and that better things await in your second trimester! Keep us posted with how you're doing.

All the best,

Rachel

[firewatcher]

thank you so much for your replies! it gives me a ray of hope that i might feel decent during the pregnancy!

So what I have seen the most difficult for POTS and our bodies is the birth and postpardum? What do the doctors usually do different during the births than normal people giving birth?

My OB recomended a C section but i know that has a lot more down/healing time. I told him i wanted to try the vaginal delivery and he said that was okay as long as my blood pressure could stay in a normal range.

Earthmother i totally know how you felt! Im barely along and already feel like the first trimester will never end!

Gatoraide and water are not doing their job like they used to so im pretty bummed about that!

Neither of my OB/BYNs knew that there was anything wrong with me at all. I had "nice, low Blood Pressure" through both pregnancies. When it came to the deliveries, I can't say they were dangerous just difficult in different ways. With the first one, I was induced at two weeks overdue. They hooked up the pitocin, but would not give me pain meds; they told me it would take all day not two hours! During the whole time my HR and BP are going up and the nurse would not check me for dilation or progression. Induced delivery without meds is PAINFUL! not natural at all! I kept asking to be checked or for an epidural and the nurse said "We'll check you at such and such a time..." and would not call the doctor or the anesthesiologist (I hope she has hemroids! ) When she finally did check, I was fully dilated and the baby had crowned, the doctor barely had enough time to get there and catch all nine pounds of him! All during this my HR and BP kept climbing till the monitor was beeping constantly till it was screaming and they unplugged it because my BP was too high for it to read.

With number two, my OB/GYN had heard this horror story and induced #2 10 days early. I got an epidural right away and and literally felt nothing making it hard to push. I don't remember them taking my BP at all. My 8 pound 12 ounce early boy came out blue, so they were more concerned about getting him pinked up before attending to me. I got moved to a room and stuck with a nurse that DID take my BP, repeatedly. She kept pestering me that I needed to sit up and drink more that my BP was too low (I never knew how low.) She finally gave up and got these wonderful, inflatable boots!

I went hypothyroid after the second, so that complicated the "joyful" time afterwards. I tried to sleep when the baby slept, but with a toddler as well as a new baby, that was impossible. Lack of sleep took a huge toll.

Just take care of yourself! I would have done things differently had I known about having POTS: more rest, more fluid, IV fluids during delivery and better anesthesia.

Good Luck! at least you are aware and can prepare!

[janiedelite]

The other thing that helps me a lot is compression hose. I'm still wearing those daily, although my tummy will be too big for the waist high in another 3 or 4 weeks.

Rachel,

Just wanted to let you know that Jobst does make maternity waist-high compression hose. They are a bit spendy, like other hose made by Jobst.

[EarthMother]

The other thing that helps me a lot is compression hose. I'm still wearing those daily, although my tummy will be too big for the waist high in another 3 or 4 weeks.

Rachel,

Just wanted to let you know that Jobst does make maternity waist-high compression hose. They are a bit spendy, like other hose made by Jobst.

I should think insurance would cover these for sure during a pregnancy especially! Just something to think about ...