Have you tried the compression hose? With a Rx from your doctor, insurance will pay for them (medicaid paid for 3 pairs for me--your doc just has to talk to the medical supply store to make sure the right thing is written on the rx for the insurance to cover it). They are fairly common for people with POTS to be told to wear daily, and actually when I was at the medical supply store they said sometimes pregnant women have to wear them. They make ones especially for pregnant women with extra room at the waist. I will admit they are hot to wear and difficult to get on/off but considering your medication options may be limited by being pregnant, compression hose might really be a good choice for you.
I looked at the two most common medications for POTS and neither have been tested/approved for pregnancy. The other non-pharmaceutical thing I know of is increasing salt and water intake to increase your hydration. When you combine that with the compression hose, it can help keep your hydration up AND keep the fluids from pooling in your feet. So maybe ask your doctor about whether it would be advisable to increase your salt/water intake and if so, by how much? The trick is you'd really have to monitor it closely because too much salt would cause high blood pressure. Mine runs low all the time, but I know for some people even with POTS they can run high sometimes. Still, it's worth asking your doctor about to see what they say. I drink zero-calorie electrolyte beverages to boost my hydration throughout the day.
I hope you can figure something out. Are you seeing a cardiologist? Cardiologists at major research university hospitals would be the ones most likely to have treated cases of POTS/vasovagal syncope/IST before (they're treated similarly) I think.
I was pregnant twice with autonomic dysfunction. The most important thing to do is work very closely with your OB and the doctor who DX your condition. Get lots of rest, and be sure to track all symptoms and anything that bothers you. Report this information to both doctors, and let the doctors share your information with eachother, you'll have to sign some medical realese forms. The pregnancy and and stress will make the disorder seem worse. Hang in there and be open about what is going on with your body. Don't try anything without docs approval. I've been there, I know what you're feeling. Keep it up, that baby will make it all better.
Thank you all for your responses, it helps just to know I am not the only one. I have transferred my care to a teaching hospital (so you get to say the same things over and over again) in the area so at times I feel like a lab rat. No one seems to know what to do, except watch and see. It is very unerving to me. I am hoping it will all get better, but each day it gets a little worse. I have been trying the compression hose, and the fluid intake, they tell me to keep upping it and I keep trying to explain that I already am "floating down river". I asked about the salt but since my blood pressure isn't stable " it goes up and down" they said hold off. The meds I am on worry me (not metaprolol 50mg), as the do affect the kid but with out them I find it hard to function at all. I think the worst part for me is going from being so independent to having to realy on people for alot of help with basic daily things. But again thank you for all your responses. At this point I am just waiting paitently to see my new sons beutiful little face. Has anyone delivered normally (without a cescerean)?
Hi. I have had POTS/OI which was diagnosed in 1998. I delivered my first baby this year in June. Unfortunately information in the medical literautre regarding POTS/OI in pregnancy is very limited. My experience was that my symptoms became much worse during the pregnancy with frequent blood pressure readings that were below the readable level. I recently met another POTS/OI patient who had a similar experience. I made the decision not to take medication and just put up with the symptoms due to a lack of info concerning the safety of OI/POTs meds in pregnancy. However this was a personal choice and depending on the advice of your doctor I believe it would be reasonable to take medication if you are disabled by your conditions as long as you are aware of a potential risk.
Amazingly, my OI symptoms became much better immediately following my son's delivery, and since his birth have not been much of a problem.
Something to discuss with your OBGYN is the potential for hypotension if you have an epidural. I did have an epidural and warned my anaethetist who went light on it. It did cause me to hypotense however and ultimately my baby was born with forceps as he became distressed. Whether this was a result of the low blood pressure in the labour we don't know.
All the best with your pregnancy and post delivery.
I have had POTS for years, but was only diagnosed 3 years after the birth of my second child. I was ridiculously exhausted during both pregnancies, pretty much the whole way through, and my blood pressure was always surprisingly low (of course I know now why, but no-one did at the time).
Both deliveries were "uneventful", to use the medical phrase. I had both naturally; the second with no pain relief at all, and had minimal tearing. Of course had I been diagnosed I'm sure my delivery would have been much more closely monitored, but in retrospect I"m glad they weren't. I really struggled with the first few weeks / months postpartum with the extreme fatigue, but I coped.
I have just discovered I am pregnant for the third time. This was not planned, though we'd dreamed of a third child. I'm currently taking Midodrine for my POTS, which helps a lot but does not relieve the symptoms by any means. I'm getting mixed messages about the risk of taking Midodrine during pregnancy, though the general line is it's best avoided if at all possible. I've got other (related) health problems and am now in the horrible position of trying to judge whether I can managed a third pregnancy and child given my condition.
None of that helps you, of course, but I just wanted to assure you that a 'normal' and 'uneventful' delivery with POTS in possible. Just hang on in there - it'll be worth it in the end.
I was diagnosed with POTS April 2007 and have felt like you, like a lab rat every step of the way. I live in the Cleveland area and luckily have an "expert" at the Cleveland Clinic, but she by no means has all the answers. I am now 27 years old and 27 weeks pregnant, due March 23rd. OBGYN also has only seen maybe 1 or 2 patients with pots but none while they were pregnant...so again I feel like lab rat. I am on no medication. I saw a high risk specialist and she said a low dose beta blocker is safe while pregnant but I chose to try it without one. I have read a lot about POTS patients getting c-sections, but this high risk specialist said I should be fine with a vaginal birth as long as they don't let me "push" for a very long time. They want me hooked up to a telemetry unit and want me to get my epidural early and allow me to drink as much water as a want. Every doctor has a different opinion and it is very frustrating when you are the patient and just want a solid answer.....which I really haven't gotten since I was diagnosed with POTS in 2007. If you have any information I would GREATLY appreciate it.
I found this article linked on DINET.
Pregnancy in postural orthostatic tachycardia syndrome. Glatter KA, Tuteja D, Chiamvimonvat N, Hamdan M, Park JK. Pacing Clin Electrophysiol. 2005 Jun;28(6):591-3.
You can get it through pubmed and probably have to buy it, or get it through a medical library. But I imagine it is worth it if you are having a POTS pregnancy. Good luck!
Wow, Sailbritt, it's funny but I also have POTS *and* am also due on March 23!!! I've had pre-term labor issues, though, and anyway will probably schedule a C-section to go easy on my system, so the chances of our making it to that date are rather slim.
So far I've been seen almost entirely by a regular OB who doesn't care about the POTS in the least. (I'm actually not sure she really knows what it is.) As long as the pregnancy was normal, that was fine, but now that I'm having problems I'm determined (even at the late date of 28 weeks) to switch to the high-risk doc I should have been using from the start. I did have one consult early on with the high-risk doc (maternal-fetal medicine doc, or perinatologist), but her approach was that in the absence of pregnancy problems before that point, there was no reason to assume that problems would eventually develop. In other words, we should treat it as a healthy pregnancy unless some new development made it otherwise. I'm not on any POTS drugs, but her one other POTS patient was on midodrine throughout and I believe had a healthy pregnancy and healthy baby.
Because POTS can affect one's reaction to anesthesia, my doc did recommend that I consult in advance with an anesthesiologist, who can make any special plans in advance and keep them in my file for whomever's on call at the actual delivery.
In terms of experience, I was destroyed by exhaustion during the 1st trimester but felt much, much better during the 2nd once the added blood flow kicked in. The 3rd has been rough so far -- I feel exhausted and generally rotten much of the time -- but I suspect some of that may be due to the calcium channel blockers I'm taking to keep labor at bay. Despite my fatigue and the pre-term labor, the baby herself has been extremely healthy in every measurement.
Good luck, all. Hope it goes well for you!
Hi all. Just to let you all know, I have had POTS for 18 years. I had my first child on 7-707 at age 31. My first trimester was a nightmare. I could hardly stand up. Second trimester was better. Third, I was put on bed rest. I was chronically fatigued, and dizzy all the time. I did take Midodrine throughout the entire pregnancy and my baby boy was fine. I actually had an OBGYN that has worked with 14 other POTS patients during pregnancy. I was very fortunate. I had to have an utlrasound every month until the third trimester and then once a week. My doctor is very educated on this subject even though there is not much about this on the internet. I guess I am just saying that doctors are out there. They are just rare to find. We are not alone in this.
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.
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.
You may want to take the following article to your doctor:
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.
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!
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.
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?
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!
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.
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.
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 :(
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!
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.
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
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.