akavella Posted January 4, 2012 Report Share Posted January 4, 2012 i found out i was pregnant nov 23, and am now soon to be 10 weeks on saturday. i am taking midodrine 10mg BID and tried to wean it to once a day, but was unsuccessful, hypotensive (70/40), vomiting, dizzy, etc. i just received a phone call from my ep at ucsf and he talked to the perinatologist up there and they said i can continue midodrine through my first trimester, but to switch me to florinef in my second, cause midodrine can cause growth retardation. here is the problem, i have been on flornief and was unable to tolerate it, sever headache, abd cramping, blurred vision etc, so i do not want to try this med again esp while pregnant. does anyone else have some advice or experience with this? has anyone taken midodine throughout their pregnancy? also i was taking pyridostigmine and was taken off by my ep when i found out i was pg, which made me sad and worried cause it was my miracle drug. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 4, 2012 Report Share Posted January 4, 2012 Can you try getting regular saline infusions while you have to be off the midodrine? How about desmopressin/ddavp? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 4, 2012 Report Share Posted January 4, 2012 I would consult with a high risk ob/gyn. They are generally going to be much more knowledgeable on the risks and benefits of use of drugs during pregnancy than other specialists. Quote Link to comment Share on other sites More sharing options...
kayjay Posted January 4, 2012 Report Share Posted January 4, 2012 I don't have any advice about the medication but I wanted to let you know that I had 2 healthy children with undiagnosed POTS. I did have to go on bed rest at the very end... I had some high BP readings and this was 14 years ago. I think you are ahead of the game knowing you have POTS. If you tend to have low BP, you may not need the meds later in your pregnancy. I hope you have a good doctor. Congrats! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 4, 2012 Report Share Posted January 4, 2012 I agree w Kayjay and should have added that many POTS patients feel so much better after the first trimester. You may as well. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 4, 2012 Report Share Posted January 4, 2012 AkavellaYou may find you actually feel better during pregnancy....I remember reading that your blood volume can almost increase by 1/2 because of the changes to your body .....I felt good until about 9 months after giving birth and then I started to have symptoms congratulations on your pregnancy....hugsBren Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 5, 2012 Report Share Posted January 5, 2012 I just wanted to say congratulations! I've heard many times that pregnancy can help the pots because of the increased blood volume. Good luck, keep us informed. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 5, 2012 Report Share Posted January 5, 2012 I went through a similar situation, my first pregnancy was normal, second was a nightmare. I posted a bit about it here (and on my blog, link is in signature):My baby ended up being born healthy, but I was on bed rest the entire pregnancy and now 4 months later I am not functioning and in the worst flare of my life. My advise would be to go with your gut about meds - everything is based on anecdotal doctor experience (no testing is done directly on fetuses- thank God), so you have to do what you are comfortable with. I had to fight the doctors on Midodrine locally, my docs at Hopkins said absolutely NO, that only Florinef was safe, and my local docs really wanted me to take it, and still do. I am waiting to try it until I stop nursing. I took Florinef from about 14 weeks till she was born at 38 weeks, and then came off because I was retaining fluids naturally from nursing. My most wonderful treatment to get my BP up and then at he end to keep it stable were IV fluids. Just be careful if they want to put in a PICC line or port, as you are more prone to clots when pregnant. And keep moving when you can - the de-conditioning has been the hardest to recover from for me.Congrats and hang in there! Fell free to message me, I just went through the same thing!Claire Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted January 5, 2012 Report Share Posted January 5, 2012 I've had three kids, all before I was technically diagnosed, and the last two were while having very acute symptoms. All three of my kids went to term (one was 15 days late!), and are extraordinarily healthy I was not on any meds, and my bp stayed very low throughout my pregnancies (never above 90/60). I did go for weekly IVs for the last two months of my last pregnancy, and it kept me functioning - it didn't do a ton for the tachycardia, but it did help with the fatigue, brain fog, etc. Sorry I can't be more of a help, but my docs are very unhelpful so I'm not grtting much treatement One thing that just came to mind - could it be that some of the symptoms you are experiencing are from pregnancy itself? I know you're the only one can feel the symptoms, so you'd know if it's different from normal But extreme nausea, vomiting, dizziness, etc, are super common during the first trimester.And congratulations! Being a mom is life-changing and amazing Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 8, 2012 Report Share Posted January 8, 2012 First of all, Congratulations on your little one! I hope that your pregnancy goes well.Wow, a bp of 70/40 isn't good, and neither is being dizzy and vomiting. I hope that you and your doctors will be able to find the right treatment for you and your baby during pregnancy.Here is my experience with my last pregnancy. I took midodrine through the whole 9 months. I took 15mg 3-4 times a day, and delivered a 10lb baby at not quite 39 weeks! No growth retardation there!I did discuss midodrine with my OB and a high risk OB, and they both agreed that it would be best for me and the baby if I took it throughout pregnancy. Part of the concern was for proper bp and blood flow. I have significant blood pooling, and there are times that there has literally been a line around my waist, above which was normal skin color, and below which was blueish/purple. The concern was that without the midodrine I would have too much blood pooling, thus preventing adequate blood flow and oxygen to the baby.It is true that midodrine has been shown to cause growth retardation. However, this has only been shown in rat and rabbit studies when the medication was given in 7-13 times the maximum dose. Plus, the rats and rabbits didn't need the medication in the first place. I think it must be different for someone who needs their blood pressure to be raised. From what I understand, midodrine has never been reported to have caused low birth weight in a human baby when the mom took the med during pregnancy. Just to be safe, my OB ordered ultrasounds every month to check the growth of the baby. For the last 6 or 8 weeks I had ultrasounds every other week.I also wore compression throughout pregnancy. This could be an option if you choose to be off of midodrine. I work knee high compression hose and mid-thigh to waist compression. I wasn't sure if I would be able to wear them even to the end of pregnancy, but it worked out just fine. The waist of the compression slowly stretched with me, and it fit well even when I was 9 months pregnant.I hope that everything goes well for you. Some women with dysautonomia feel better during the 2nd and 3rd trimester because of the increase in blood volume. Hopefully it will help you too!All the best,Rachel Quote Link to comment Share on other sites More sharing options...
gillian502 Posted January 18, 2012 Report Share Posted January 18, 2012 hi akavella!i rarely use this forum, but a fellow dysautonomia friend who uses it told me there was a post on here about someone who was pretty much in exactly the same boat as i am--pregnant (due aug 3) and with POTS and Neurocardiac Syncope!would love to email sometime--please let me know if you're interested. in the meantime i can tell you about my preg experience thus far.i am being treated as a high-risk pregnancy due to having the 2 types of dysautonomia i have, plus having 2 autoimmune intestinal diseases (celiac disease and colitis.) i've been sick every day for 9 years. i am currently about 11 and a half weeks along and have chosen to remain on my medication. i currently take a beta blocker and mestinon. both are category C drugs, and i feel comfortable after my research staying on them. it sounds from your post as if you were taken off mestinon--i don't know why that would be, since the only cases known of pregnant women taking mestinon during their pregnancy have turned out just fine, but if you get a conservative-minded dr, this can happen. so far, my high-risk OB has not batted an eye nor thown much advice my way one way or the other about any of my meds. i guess it's all being left up to me.my preg so far has been relatively easy with no morning sickness and feels only slightly different compared to my usual daily illness. perhaps i'm so accustomed to feeling ill, fatigued, and generally unwell that pregnancy itself just kind of "blends in" with my normal routine, lol. my HR has increased greatly, and of course was already too high to begin with, so that HAS been tough. otherwise the most difficult part has been not being able to take my beloved aspirin products to control my migraines! that has been difficult as well. like other pregnant dys patients, i am hoping the myth of feeling better during the 2nd and 3rd tri's turns out to be true. fingers crossed on that one.please let me know if you'd like to chat again, i'd be happy to email.gillian Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 18, 2012 Report Share Posted January 18, 2012 Congrats!I got pregnant 2 years after diagnosis and did okay first trimester, good the second, and terrible the third. My POTS was really controlled before pregnancy ( I could drive, work, ect) and by the 3rd trimester I was bed bound again.After birth I did pretty well for 6 months and then went downhill fast. My daughter is almost 2 and I have not been able to function since. I have just decided to apply for disability and hope one day I can become functioning again.Hope you start to feel better and try to enjoy it! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 4, 2012 Report Share Posted February 4, 2012 Hello!Sorry I'm a little late chiming in. I'm currently 13 weeks pregnant and have been on midodrine the entire time. I also have a 2 year old and took it during that entire pregnancy, delivering a healthy baby. I'm planning to take it this entire pregnancy if needed. I am taking as little as possible. Which is 15 mg doses some days and some days I can get away with lower doses. I find pregnancy to be kind of a wild ride of symptoms but none seem to last the entire 9 months, lots of ebbs and flows. Hope this helps. Feel free to ask any other questions!Lisa Quote Link to comment Share on other sites More sharing options...
akavella Posted February 18, 2012 Author Report Share Posted February 18, 2012 thank you too all who posted. i am now 16weeks and doing great. i so far feel better now that before, maybe because i felt like i was on my death bed for so long day in and day out. now i am still on midodrine, no morning sickness. my hr has increased slightly, but not taking a beta blocker yet, my bp is still low, and my symptoms r/t pots such as dizziness, sob, and fatigue are increasing a bit, but i am not passing out yet (thank god).i seen my ep specialist and he says i am doing great, however, he is going to do another holter monitor in my third tri to see where my baseline hr is. he suspects i will need a betablocker, and warns me now that i will more than likely not be able to work in my third tri and might start passing out again, which he wants to prevent.i am open to any private messages as well if people have questions, or would like to share and exchange experiences, and appreciate the messages that i have received. it is so nice to have a place to come to and openly talk to people who understand what you are going through, so thank you for that!!! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 18, 2012 Report Share Posted February 18, 2012 That's great that you are doing better! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 18, 2012 Report Share Posted February 18, 2012 Thanks for your update! I'm 16 weeks as well (we can go through this together) and just this week have been able to go off midodrine thanks to the extra blood volume. I don't feel well upright but my bp is much better with the extra blood volume - enough that I'm not worried about blacking out. I realize this could change again, well see. Hope all continues to go well. Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 19, 2012 Report Share Posted February 19, 2012 I'm glad that you are doing better now than in your first trimester. Reaching the 12 week mark can really make a difference sometimes. I hope that the rest of your pregnancy goes well and that you and the baby both stay as healthy as possible.Rachel Quote Link to comment Share on other sites More sharing options...
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