POTS and Pregnancy

[junbug52704]

I was wondering if anyone has delt with POTS while pregnant. I am now 21 weeks, the symptoms have started a very long time ago, but I have been misdiagnosed with this or that for years. The doctors are thinking the stress I went thru just before my wedding actual made this episode start and that the pregnancy is just really aggravating it. I had to fight to get a doctor to realize something was wrong. But when I finally found a great doctor he figured it out in a few minutes, I guess because the right symptoms presented at the right time (orthostatic, sinus tachycardia, veniuos pooling, syncope, dizziness, lightheaded, tremousleness, vision issues,stomach issues...etc) But other thatn the research I can find I can not get any info on this during pregnancy. My doctors have only treated 2 people with POTS, so needless to say I feel like somewhat of a lab rat to them. Needless to say this is not a situatio I wish to be a lab rat, all though happy to have a name for what is wrong with me. I was wondering if any one had any info about pregnancy and POTs. They currently have me on Metaprolol very low dose, which isn't doing anything but causing more issues, but are scared to do much of anything to me. Any ideas would help sooth my mind.

[hp0416]

I am also taking midodrine, but would like to have another baby. Are things still going well with you. Do you think it is worth the risk?

[mgam3131]

Hello my name is Meagan and I have had POTS for 7 years now. I recently found out that I am 5 weeks pregnant. I have successfully managed my very severe tachycardia with Metoprolol. When I was first diagnosed they prescribed 25mg TID (three times daily), then last year it stopped being as effective and the dosage was increased to 50mg TID. Im wondering if any of you ladies have been in my situation and stayed on the metoprolol throughtout your pregnancy and how did things turn out?? Typically I live a very normal life when I'm on my medication, if I don't have it...I'm bedridden. my heart rate will be 200 and I will not be able to stand after just stopping the medication for one day. Please weigh in and let me know if you have any experience with this. Thank you!! Also, has anyone tried Labetelol? They want to switch me to that...

[ts_mommy123]

Hey everyone, I'm 24 years old and am 19.5 weeks pregnant with my secpnd child. I've been struggling with POTS since I was a child and as I entered puberty & young adulthood it only became worse. By the time I was 20 my condition was still undiagnosed & was one of the worst & most extreme cases seen thus far putting me in the hospital 3x a week. It wasn't until my husband who was a friend at the time who was an internist started researching and looking into it did I finally get my diagnosis. NONE of the known medications worked for me except the metoprolol and even that barely touched me. I found during pregnancy my condition was nearly non existent until the last month or so when the baby was full grown and needed a c section delivery 3 weeks early. After pregnancy, I was still protected by the hormones being regulated while I was breastfeeding. Once I began to run out of milk my symptoms began to return one by one. My husband had tried me on losarten (not listed fpr this use) based on allhis research on it and how the bobody works during POTS and isosorbide. I stopped taking these medications once I became pregnant again for safety issues but again had no kore symptoms. I have just thispast week began to have symptoms due to the position of the baby. That being said I think eveveryone's body works differently and each pregnancy is different from the last. You just have to keep trying till u find what works for u. If u feel something is wrong keep searching don't settle just bc a dr told u everythings fine. I was told by the head cardiologist of the university of miami that I only had two years left to live when I was 20. And that I could never have children. Here I am today 4 years later healthier than I've ever been, married, with a second baby on the way and graduating from nursing.

[ts_mommy123]

Hey everyone, I'm 24 years old and am 19.5 weeks pregnant with my secpnd child. I've been struggling with POTS since I was a child and as I entered puberty & young adulthood it only became worse. By the time I was 20 my condition was still undiagnosed & was one of the worst & most extreme cases seen thus far putting me in the hospital 3x a week. It wasn't until my husband who was a friend at the time who was an internist started researching and looking into it did I finally get my diagnosis. NONE of the known medications worked for me except the metoprolol and even that barely touched me. I found during pregnancy my condition was nearly non existent until the last month or so when the baby was full grown and needed a c section delivery 3 weeks early. After pregnancy, I was still protected by the hormones being regulated while I was breastfeeding. Once I began to run out of milk my symptoms began to return one by one. My husband had tried me on losarten (not listed fpr this use) based on allhis research on it and how the bobody works during POTS and isosorbide. I stopped taking these medications once I became pregnant again for safety issues but again had no kore symptoms. I have just thispast week began to have symptoms due to the position of the baby. That being said I think eveveryone's body works differently and each pregnancy is different from the last. You just have to keep trying till u find what works for u. If u feel something is wrong keep searching don't settle just bc a dr told u everythings fine. I was told by the head cardiologist of the university of miami that I only had two years left to live when I was 20. And that I could never have children. Here I am today 4 years later healthier than I've ever been, married, with a second baby on the way and graduating from nursing.

[ashspenc21]

did they do anything different/special during delivery?

[tape49]

I went through a similar situation and through many suspected diagnosis before finally being diagnosed with POTS. I am a med student and in my hospital's arrythmia clinic, we usually sugest treatment with Pindolol at low doses which is better at lowering your heart rate without lowering your blood pressure.

A doctor gives a brief answer in National Dysautonomia Research Foundation FAQ section:

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?

The effect of pregnancy on POTS and on patients with OH are two different questions. 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.

http://www.ndrf.org/answers.htm#9

I hope this helps.
I hope your pregnancy went well as I am also looking to get pregnant and was worried of possible complications.

[hbshrrl]

Is there any chance you can tell me who your OB was? Having a hard time finding one in Orange County, CA. Thank you very much.

[whitney13]

i had POTS while pregnant in 2009, i chose to take no medication during the pregnancy i found plenty of water & sleep helped alot.
i had low bp & was told increase salt intake & water.
I worked till the night i went into labor but went casual from 7 months so had a few days of rest every week.
During labour my heart rate was 200+ bpm, 12hours later it was 180bpm so has b blockers every 4hours till it came down.
My cardiologist has assured me it can be managed with metaprolol during pregnancy but you have to be weaned off the pills towards the end of your pregnancy.
No other problems during labour.
here is a case study link for you about a delivery with pots : http://bja.oxfordjournals.org/content/97/2/196.full

And a facebook page about it: http://www.facebook.com/topic.php?uid=221438159363&topic=16766

[miab428]

I see that this post is old, but I'm hoping people still check it.  

I am 33, recently diagnosed with POTS after my treatment for NonHodg. Lymphoma last year.  I have been dealing with high pulse, low bp, dizziness, fatigue (which all seemed to get worse a few months ago).  One cardiologist said it was just inappropriate sinus tach, but he couldn't explain the LOW bp (like 80/50??).  The bp is definitely the worst in the morning.

Anyway, I found out last week I am pregnant and while this was something we tried for 18 mos. before my NHL dx, I am having anxiety about the POTS now.  It's always something for me, apparently.

I see that people posted here originally, but they didn't come back to update how their pregnancies went.  UPDATES, anyone??  And did people work all through their pregnancies?


PS.  I am on 25 mg of metoprolol - hope it's harmless.

[MeghanMMc]

I, too, have POTS and I, too, am incredibly frustrated with the Medical community.  I was 16 weeks pregnant and doing pretty well, suddenly, my pulse started to go up and my dizziness became unbearable.  When we went to the ultra sound we found that our baby had several birth defects, and was not going to make it.  We had to terminate.  While the doctors are confident that the problems were not POTS related, I am not so sure.  The tests came back that the issue was not chomosomal, as they had originally thought.  I am currently taking 40 mg of Nadalol daily, and am afraid that the Nadalol had something to do with defects although...as you all know...the doctors ignore your concerns in most cases.  Has anyone been on Nadolol while pregnant?  Has anyone attempted to ween themselves off the beta blockers?  Any info would defineitly help!  

[Stbrumb]

Another self-treatment you can do (pregnant or not) is tilt the head of your bed up 4 - 6 inches. Sleeping on a slight angle helps the system build up better endurance. Going from laying flat all night to standing up in the morning can be extremely difficult. Going from almost flat to standing up is much easier. I've been doing this for the past 3 years upon recommendation of my cardiologist and it does help.

Also, if you see a cardiologist, try to find an electrophysiologist in particular. They are the ones who should know about POTS and dysautonomia.

[evo123]

Hi, thanks for your post here on this thread, but as it is an old thread maybe you would like to start a new one.  Sometimes people overlook the older threads and would miss your post x

[Lavinialuna]

I have not been properly diagnosed, but the symptom sheet reads like it was my diary.  I have been sick for almost 8 years, since my 3rd was born.  I had an infection in my epidural, a tear in my cervix up into my uterus and therefore surgury, and the trauma that came with not only waking up during the procedure (naked, upside down, in pain and freezing cold) but I almost bled to death.  I have never been the same.
I am pregnant now with my 5th, this will be the second one with these symptoms, and it isn't a picnic, however, my life before this pregnancy wasn't a picnic either.  I am always tired, I hurt everywhere, have sudden strange sensitivity to meds and food additives, I have insomnia, migraines, and tons of  pain.  
My biggest problem that I have right now (at 8 weeks along) is that I had to stop taking my beta blocker for borderline high blood pressure and all of the heart symptoms have returned.  The racing, the dizziness, the pressure in my ears, the bloating, the headaches, the numb limbs...it is aweful!
I have given birth vaginally though since I got it, WITH an epidural (yes, even after the bad experience, I had to do one because the stress of my incredible headaches would have made birth impossible because my heart races with exertion) so the epidural helped to keep me calm.  My BP has been pretty good, if not high, but it has always been taken sitting down.  
Your right though, no one around here have heard of it either, or they poo poo the idea.  I am going on 8 years of misdiagnosis, I just want to be well!  Good news is that this can get better with proper treatment :)
I saw a maternal fetal medicine specialist who says he will put me back on the beta blocker after 12 weeks when the most important fetal development stage is over.  I can't wait!!  Just want to be normal!
I'll let you know if I learn any more.

[HeidiHope]

I am 28, and had my son 10/2/2007.  I was diagnosed with POTS in March 2009, but I've had symptoms since I was 12.  My first few weeks of pregnancy were rough, with several severe episodes, and I had two miscarriages earlier, so I was referred to a high-risk OB, who sent me to a cardiologist, who unfortunately did one EKG and declared me fine.  Because of the miscarriages and syncope episodes, though, the high-risk OB continued to see me throughout the pregnancy, as well as a regular OB, and they kept a very close eye on everything.  From the second half of my first trimester until halfway through the third trimester, everything went fairly well, although I had to be really careful to drink plenty, and because I live in the desert and it was summer I couldn't go out during the day, because extreme heat makes me faint even without being pregnant.  My dr. didn't want to do an epidural, but I had reactions to all the other pain medications, was not progressing well, and kept fainting during labor, so he did an epidural after all.  I actually fainted during the epidural, while the needle was in, but my husband was holding me tight, and everything ended up ok.  I almost ended up with a c-section, because I was in labor so long without any progress, but in the end I was able to deliver vaginally, with a vacuum assist.  The hospital kept me a few days, just to make sure everything was okay, which it was.  One thing that helped me a lot when I got home, was we had purchased a basinet that could have the height adjusted, and could rock or have wheels, with a simple click.  That way, when I was needing to move around the house, I could put my son in the basinet and roll him from one room to the next, without having to worry about if I fainted.  I actually did much better for awhile after having him, so I didn't really need to worry so much about carrying him, but just having the peace of mind helped a great deal.
Compression stockings are great, along with the extra fluids, and your OB can check your electrolyte levels to make sure they are okay.  I had to do several IVs with extra electrolytes because my body couldn't keep them balanced, so it's important to check.  We did monthly ultrasounds, and the last few months, we did a lot of non-stress tests, sometimes 3-4 times a week, to check on my son and make sure he was doing well.  It helped my stress level a lot to be able to hear his heartbeat and feel him move while they were doing the test.  Again, my son was born very healthy, and everything worked out fine.  Good luck!

[roo218]

i'm due baby no.3 in nov 2010. i came off my meds after finding oput as i thought they were not safe (bisoprolol) now the dr is saying it may not be safe for the baby not to take meds as the blood flow to the uterus as any other organ may not be sufficient. i don't know what to do :(

[eyphillips22]

I have had POTS for 15 years; although it was called something else when I was first diagnosed.  My symptoms got much worse (and have stayed worse) with my second pregnancy.  I feel like it hit the acceleration pedal on my POTS.  I really want to have a third child, but I don't know if my body can handle much worse... and I have two kids to take care of- if the fatigue gets any worse I will be in bed 24/7.  I was wondering if you guys think that 1) the pregnancy made your symptoms worse and/or bring on new symptoms?; and 2) have those symptoms subsided?  After reading all of these posts, I am so glad my OB didn't take me too seriously b/c I couldn't have done it without an epidural... although my heartrate was a steady 31 after my csection.  I am SHOCKED to hear that many of your dr.'s seem 'tuned in' to the POTS- with the exception of my cardiologist, every dr I tell rolls their eyes at me.  

[dmolina]

I just had my baby in November. It was, as you said, a nightmare. My doctor didn't even know what POTS was until I told him, and then still didn't understand. I wasn't able to get the epidural because everytime they did the test shot (4 trys), my heart rate went way up, my body was shaking uncontrollablly and my blood pressure went crazy. They made my husband leave so I was in there for 1 1/2 hours by myself while they tried to figure out what to do. I wasn't progressing as fast as my ob wanted. He was nervouse of my heart rate the whole time. He wanted to do a c-section but was scared to because of my body reacting the way it did with trying to get the eppidural. He said he would have to put me to sleep to do it, and he was afraid that I might not wake up if he did. Good luck to you. Hope you have a better pregnancy and delivery then I did.  

[jtol946100]

so what ended up happening? did you deliver vaginal

[Rahjah]

Hi, I am 38 weeks and have POTS in pregnancy. This is my second pregnancy - both of which I have had POTS but I don't have it at any other time.

The doctors here think I'm a bit of an anomaly, there is not much information and little - to -no understanding of it I have to say. I have been on increased salt and water which has helped but hardly much> I have about 5 minutes standing time at any given time, though I'm worse in the mornings.

I'm feeling pretty nervous now about how to labour in this condition - last time was something of a nightmare. Tried to do it naturally, ended up with an epidural (which didn't really work anyway) and a vaccuum delivery due to a distressed bub.

I've been trying to find info on how people birth their children with POTS. It seems cesarians are very common!
I'm glad to find this thread anyway - I wish there was more support out there available to us!

[Frankiebell]

I was diagnosed with POTS 3 years ago, though I've been sick for over 10. At the time of diagnosis I was basically bed bound - I'd faint on trying to stand. I was on Midodrine for a while but have been functioning fine for the last year and a half on high doses on H20 and salt, and not being upright without full compression stockings. (this makes the beach a real hoot.)

I am now six weeks pregnant, and completely exhausted. I work from home, full time, but I have been unable to really sit up even for more than an hour here or there. From what I've read here, I guess this is the norm for the first trimester, which really *****.

Anything that has helped y'all with the exhaustion?

[dmolina]

I am in need of any information on POTS and pregnancy. I am currently 23 weeks. My ob never even heard of POTS and my cardiologist has only had one case of it, without pregnancy. Any information would be greatly appreciated.

[cjliving]

It's nice to find others going through the same thing. I had my first little one and my first doctor just blew if off... so I switched!! And I love her. She didn't know anything about POTS but she researched all she could and came up with a good plan of attack. All the other doctors and nurses knew about me.. so I went in they were all prepared. I couldn't even stand at 37 weeks so they induced me. They gave me an epidural early on so my HR wouldn't go too high. They just had to give me a different kind of medicine than normal. They also pumped a lot of fluids on board, and had me push in a different way.. but I ended up having a c-section because I wasn't progressing after 22 hours! But it was nice to find a doctor who truely wanted to help me. I am pregnant again with my second.. and I can barely function. I have to wear compression socks to get around.. and have to stay inside because it's summer and heat just makes it all WORSE. Hang in there ladies.. people are starting to realize its just not all in our heads!

[Heiferly]

You may want to take the following article to your doctor:

http://www.anesthesia-analgesia.org/cgi/content/full/104/1/166

It is not universal practice that POTS patients are not candidates for epidural.  Sorry to hear that this was not discussed with you sooner for your first pregnancy so you could be prepared for their decision to let you have it.  

[selevitto]

I have had POTS for eight years and I am having a LOT of dizziness here in my first trimester.  I can barely stand up in the mornings.  I personally do not want to take medication though so I've been loading up on Gatorade which isn't helping yet.  I don't remember having a lot of problems with it during my previous (first) pregnancy though so I'm hoping it will get better as my pregnancy progresses.  I Just thought I'd give everyone a heads up on the epidural though.  I was told by an anethesiologist when I was in labor with my first that I was not a canidate for an epidural because of my condition.....not something you want to hear during really painful contractions!!!  They've become so common place that I just assumed it would be available to me when I needed it and it was in my birthing plan!  My doctors never told me it may not be an option.  I would recommend researching other forms of pain relief (such as medications and breathing techniques) so that you are prepared to give birth without one.  I would have made sure I was much better prepared had I known it wasn't an option.

[llynmyhrt29]

I think it really does depend on how badly your POTS affects you on a day-to-day basis. I am like you, also feeling like a lab rat. I'm still in first trimester, and am seeing an OB, Perinatologist (high-risk OB), and cardiologist. Neither the OB or highrisk OB know anything about POTS which is disconcerting. But I just try and listen to my cardiologist as best I can. I was on fludrocortisone (florinef) but stop taking it at 6 weeks. That was a personal choice though. Since there are less than 200,000 people in the u.s. with POTS it is hard to find drs who even know about it. So if you have a cardio, then I would listen to him the most.