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Wow! April, I hope that it all goes smoothly for both you and the baby :) Congrats! Nina

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Ditto! :)

PS I hope your pots symptoms will get better with the increased blood volume. Salt and water will definitely help with that. Florinef hasn't been approved as a medication that's safe to take during pregnancy; I'm not sure about Zoloft and all the rest. But I'm sure your OB will talk to you about all this! (Don't forget to tell them about the meds you're on!) Good luck!

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Im not due til next year in january. I am less scared and more excited than I was a few days ago. My cardio actually told me to stay on the florinef and that they would monitor me closely because he doesnt feel comfortable taking me off of it right now. I go to the ob on the 21st to I will know more then and will definately keep you guys up to date. Thanks for the support! :)

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April, I realize that you didn't post your announcement because you had any particular questions or concerns about it... and I thought long and hard about whether to post another reply. Perhaps I'm overstepping my bounds--and forgive me if you think I am--but I want to share with you some information from the National Dysautonomia Research Foundation Web site (NDRF.org) -- written by Dr. Low, one of the leading clinical physicians for patients with POTS and other dysautonomias at the Mayo Clinic in Rochester MN.

I'm pasting this info here because of something you wrote in your last post ... your cardiologist is concerned about taking care of you and not your developing fetus. (When I mentioned before about florinef and other drugs not being approved for use during pregnancy, I meant that it wasn't safe for the baby--not that it wouldn't be safe for YOU.)

The 21st of June is three more weeks away, and your first trimester will be nearly over, yes? An awful lot of development is going on during this time... please read this from Dr. Low, and consider at least calling your OB to talk over the medications you're taking--if not changing your appointment and seeing her/him earlier. Your OB and cardiologist may need to work together--and with you, of course--to find appropriate therapies that will be OK for everyone (you AND your baby).

Question: Has any research been done on the effects of pregnancy on women with Dysautonomia ( specifically POTS, syncope, and Pure Autonomic Failure) and the effects of the mother?s health and/or medication on the baby before and after birth?

Answer: We have limited information on POTS and pregnancy. These patients being typically female and being fertile can become pregnant. Our patients have managed very well during their pregnancy and the delivery. They typically do very well during their pregnancy, feeling better than when they were not pregnant, especially during the first and second trimesters.

They should not be on any medications during their pregnancy.

The advice I give is as follows. They need to feel sufficiently well that they can manage without any medications. They need to be on a high salt, high fluid regimen. Their pregnancy should go well but should be managed as a high risk pregnancy by their obstetrician. During their delivery, their physicians need to ensure that they are volume expanded and like other high risk deliveries, they should not have to undergo prolonged labor. Finally, I tell them that they should be aware that they may feel worse in the puerperium (after their delivery) when their symptoms may return.

Patients with MSA, PAF and the autonomic neuropathies are more often older patients who have had their families, so that the question of pregnancy usually does not arise. The same advice that I give to POTS about medications and delivery applies. Additionally, they should be aware of two additional facts. First, they have generalized autonomic failure, so that their BP control is poor and the stress of pregnancy is a major stress to the autonomic nervous system. Second, the drugs that are sometimes used during delivery may have unexpected effects. Specifically, they may have denervation supersensitivity to certain drugs, so that an excessive rise in BP can occur with certain drugs. Some hypotensive drugs can cause their BP to plummet. In general, we do not recommend pregnancy for patients with generalized autonomic failure.

Dr Phillip A. Low , M.D.

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Merrill, thank you for your concern. My cardiologist has handled many pregnancies where the mother has had to stay on florinef with no adverse affects to the baby. I actually tried to go off of it but my heart rate shot up to 180 and I couldnt get up without passing out. My bp bottomed out too. So my dr is concerned that if I try to go off of it that it will not only do harm to me but to my baby. I will call my ob and ask her what she thinks and I dont think that you were overstepping your bounds. You were just concerned for the health of my baby and I appreciate that.

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CONGRATULATIONS!!! I am so happy for you! This baby will be a blessing for you- more than you can imagine.

I took Florinef all throughout my pregnancy, and had no adverse effects to my or the baby. My doctor, like yours, felt more comfortable leaving me on it because of the risks of NOT taking it- passing out and hurting myself wouldn't have helped the baby :) The only thing you do need to watch, though- it could make you gain an unhealthy amount of weight- if I could go back and do it over again, I would have tapered off about halfway into the pregnancy when my body was retaining more water all by itself. I gained 80 lbs and had to deliver early due to high BP from the meds and weight gain. Just wanted to throw my input in on that topic (as always, lol).

Anyways I am so happy for you, and I wish you the BEST of luck during your pregnancy! There are several of us mommas on the boards who will be happy to answer questions, etc... if you run into any obstacles. In the meantime....enjoy theese next few months and PAMPER yourself!!

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I am so happy for you and will keep you in my prays for the next 9 months. Please keep us all informed about your pregnancy we would love to share this wonderful time in your life with you.

I have also been advised not to have children. But go for it and look after yourself well over the next 40 weeks of your life. Follow your heart is the best advice I can give you. You will know what is right for you and the wonderful life growing in you. :)

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Hey April:

Sorry to open this posting back up. I have wanted to respond for a couple days, but my youngest daughter was in the hospital for high fever and dehydration. Supposedly just a viral infection but not fun just the same. She is home now and doing fine!

Anyway congrats on your news. It is so exciting. I still say that the blessing of usually healthy babies and Moms far outways the risks of any research on POTs and Pregnancy presented. I am about 24 weeks along now. I already have 3 girls and just found out I am having a boy! I am usually very sick and POTSY throughout my entire pregnancies...but this one has been different. A little increase in nausea and migraines during the first trimester and now everything has subsided. I don't know if it's even too soon to note that many of my POTS symptoms have toned down as well....maybe it's because it's a boy - just proof that every pregnancy is different.

Merrill's research is a little scary. I did not find out I had POTs until after my third pregnancy, so I'm taking this delivery with an entirely new precaution. I have done a lot of my own research on this and also used my past delivery experiences. This time around I have involved my OB/GYN, Neorologist, Cardiologist, Pediatrician, and a heads up will go to the Neonatologist on call.

All parties seem to agree that everything will be just fine. There is a little discrepancy about my beta blocker, Toprol, during delivery. My cardiologist is worried that it will slow down the baby's heart rate. My OB/GYN has never seen any effect from this drug. ...So I turned to a third party, my Pediatrician who informed me that my OB/GYN would be most up to date on the drug and its effect on my baby. She suggested that I take the OB/GYN's advice, but give the neonatologist a heads up when I go into labor just in case. I will also have a list of all of these doctor and their numbers so they can be contacted in case of any emergency.

So I guess my point is that I would contact your OB/GYN regarding your florinf. He/She will have better knowledge on its effect on your baby. I also think the water intake factor is huge. If you have an epidural they usually dump two bags of fluid in your IV before they do the insertion. This helps with your water/blood volume. Of course you'll have to do your own research on the pros and cons of POTS patients and epidurals. Be sure to request the fluid if you get one or not.

Any way, it is good to have advice like Merrill's to give you a heads up, but I didn't want it to scare you either. I'm sure you and your baby will be just fine. While I was in the hopsital this weekend there were signs posted everywhere that said, "Patients - Speak Up!" It listed 10 things you can do to help your caregivers take care of you. As a POTs patient, make sure you speak up about your concerns and give all of your drug and symptom info to your nurses. You should repeat it when they switch shifts too because they don't always have time to read all the previous notes. OK - I'm getting off my preaching block! Have a great pregnancy :ph34r:

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Migraine-

I was taking Florinef and a beta blocker during my pregnancy (my POTS doc and midwife were working closely together to monitor me carefully throughout the pregnancy) and both thought it would be more beneficial to have the meds, as in my case the benefits outweighed the risks. I just wanted to note, since you had mentioned some concern over the baby's heart rate and the beta blocker- that during my last week of pregnancy it DID slow down his HR and there was some concern over this- so I was hooked up to a monitor for a few hours, and since his movements looked fine and there was at least some increase in the HR that corresponded with his activity, they decided that everything was fine. And of corse then came a healthy baby a few days later :ph34r:

I was thrilled to have a midwife- I went through the first half of my pregnancy with an OBGYN who made me feel very "clinical" and didn't at all understand POTS- and since I'm into more natural stuff I decided to see a midwife- and she ended up taking more time to research and understand POTS so there would be no problems with delivery. I had the "perfect" birthing experience, DRUG free and I think my recovery was faster because of that fact (no meds to interfere with my already sensitive system). They did give me extra fluids just during and after delivery through the IV, because of the POTS, but other than that I had little to no medical intervention and I really think it was for the best. But I did deliver in a hospital birthing center "just in case".

Anyhow I just wanted to share my experience with the meds as well...it's a personal decision and one that your doctor can help you make. YOu may find as your pregnancies progress that you don't need the meds anymore. Good luck to all you expectant moms!! Enjoy this time!!

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Hey Ethansmom:

Thanks for the heads up on the beta blocker. I will definately watch the heartrate like a hawk. During my last 2 months I have docs visits every two weeks and then every week. I plan on really charting the heart rate during this time. I take the beta blocker for migraines and potsy symptoms. I have not had a migraine since early in my first trimester, so I am tempted to just ween myself off the beta blocker during the final month and see what happens.

The birthing center sounds wonderful. I have been wanting to try midwives and a birthing center for some time now. It sounds silly, but I feel loyal and a little superstitious about my OB/GYN. Like if I try someone else, something will go wrong. Several family members and friends work at my hospital and always say that even though his bedside manner is not that great, he is the one you want when you or your baby is seriously in trouble. My neighbor had 5 little girls with midwives and loved the experience. With the last one she had placenta previa and ended up with my doctor. I was comforted to know that the midwives trusted him as well.

I'm hoping (since this makes #4) that I will be one of those women that just wake up and say, "it's time", drive to the hospital, and have the baby...but that probably won't happen :P

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April,

Congratulations. That is the best news anyone can receive. Babies have a way of bringing our life to perspective. I had one son and couldn't seem to ever get pregnant again then 10 years later when I thought I had a stomach virus that wouldn't go away I found out I was pregnant. Even though I started completely over and was an older mother (35). This child actually has saved my life so to say. Once again congratulations.

Paige

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I was just wondering how everyone felt during their pregnancies. I know that every pregnancy is different but I was just wondering how you all felt POTS wise during your pregnancy. I have been feeling pretty good. I have constant nausea and am tired alot but I think that that has more to do with the baby than with POTS. My mom is concerned that I will not do well just based on what she has been reading. I always have low bp rather than high so I am not worried about that. I just thought that the increased blood volume would help me to feel better. Any thoughts would be appreciated.

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April--

The short answer is that most women with POTS feel great/better during pregnancy b/c of the ability to retain more fluid.

I have also always had low bp, but developed pregnancy-induced hypertension in the last few days of my pregnancy. Obviously that will be monitored and hopefully you won't have that problem.

I felt horrible during pregnancy, but had no diagnosis til 4 months post partum. A diagnosis would have greatly helped my symptoms and the problems I had at labor and delivery.

Katherine

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April,

It's hard to tell how you will do during your pregnancy, but chances are (based on the "norms") that you will do better as things progress. With the exception of a few moms I've talked to, most women feel great during the second and third trimesters.

The nausea and fatigue are definitely normal parts of pregnancy- POTS or not. Have you tried a wristband? I had all day sickness for the first 4 months straight, and the anti-nausea wristbands gave me some relief- mainly through the placebo effect, lol :) With luck, it will pass around week 12. How far along are you now?

This is so exciting!

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