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Long-Time POTS; First-Time Pregnancy


Wendy
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Howdy ya'll. I'm brand new to this forum. I've had POTS for 7 yrs, and have been doing really well with just low dose beta blockers (Zebeta). In Feb I became pregnant for the first time, and have not had a very easy time of it since. Now I'm well past the first trimester, and trying to get back on beta blockers, and they are giving me bad vascular headaches.

Two questions: Can any one point me to information on beta blocker use in pregnancy? I tried Toprol, and that was a disaster (vascular headaches, fainting spells). I'm back on an extremely reduced dose of Zebeta, but there are no clinical trials on its use during pregnancy, so I don't even know if it is safe for the baby.

Anyone have advice on what to expect in second and third trimester for a person with POTS? I've been kinda in the dark because I haven't been well enough to surf the net for info until very recently.

I appreciate your responses in advance.

Cheers,

Wendy

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Hi, Wendy. Welcome here. Would you tell us a little more about yourself? When you say you've not had an easy time ... can you describe that and give us a better idea about what symptoms you're working to control? Can you say more about why you want to go back on beta blockers?

You might also tell us what non-pharmaceutical things you've tried ... that way, people (especially those who've gone through pregnancies) can see whether there's anything else you might try that worked for them.

(Also, I presume you've talked to your ob/gyn and/or your cardiologist about your experiences with the two bb's you've tried ... what else might they recommend? Maybe it's just a dosing issue?)

Thanks -- best,

merrill

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Hi, Wendy. Welcome here. Would you tell us a little more about yourself? When you say you've not had an easy time ... can you describe that and give us a better idea about what symptoms you're working to control? Can you say more about why you want to go back on beta blockers?

You might also tell us what non-pharmaceutical things you've tried ... that way, people (especially those who've gone through pregnancies) can see whether there's anything else you might try that worked for them.

(Also, I presume you've talked to your ob/gyn and/or your cardiologist about your experiences with the two bb's you've tried ... what else might they recommend? Maybe it's just a dosing issue?)

Thanks -- best,

merrill

Merrill, Thank you for your welcome. Sorry for being so vague, it's just alot of symptoms, and I tend to ramble. Apologies in advance.

Before pregnancy my pulse was around 60 bpm resting, 90 ish bpm standing - on Zebeta (5 mg 2x a day), 140+ bpm - when I wasn't taking Zebeta. BP averaged at 105/65 with little to no variation with postural changes.

Starting at week 7 of pregnancy, I had uncontrolled vomiting and colonic inertia, I couldn't eat and ended up losing 31 lbs by week 13. My tachycardia worsened because of the nausea and vomiting, and really worsened after my doctor took me off beta blockers for the remainder of the first trimester. Basically, I could not move much at all. I ate ice constantly to try to keep hydrated, because I couldn't keep down electrolyte based drinks. I also had migranes, but I'm assuming that had nothing to do with POTS since I never had one before being pregnant.

Second trimester nausea and vomiting have improved as expected. Main complaints include continued colonic inertia, and POTS issues (as high as 140 bpm again) including : lightheadedness/loss of orientation with postural change, dehydration, muscle spasms pain, and weakening (I've had this all through my 7 year stint with POTS, mostly controlled by the Zebeta before pregnancy, worsening recently when I came off the beta blockers). I sometimes pass out trying to have a bowel movement, and frequently have to stop trying althogether because I'm hyperventilating. I can barely walk from my bed room to my kitchen without having to lie down to recover, which was why my doctor wanted to retry beta blockers to give me some quality of life again.

When taking the Toprol (25mg 1xday), I experienced painful vascular headaches, vascillations in BP when standing, but my pulse evened out for the most part. I also started having blackouts (loss of orientation and then consciousness); and collapsing (no loss of consciousness, my legs just collapsed). While collapsing I'd break out in a sweat, hyperventilate, lose my sight in one or both eyes and lose my hearing for up to an hour. When I caught my breath I'd feel the blood rushing up my neck into my head and pounding really hard.

I recently switched cardiologists because the one I was seeing seemed pretty darn lost when the Toprol didn't work (I'm new to my city and in process of finding and educating new doctors). In the meantime, my OB has given me the go ahead to restart Zebeta, so I have at a VERY LOW dose (2.5 mg). I'll see a new cardiologist next week, and ask them about the dosing and safety

Non-pharmecutical I've tried a variety of things to help with the lack of bowel movements, which seems to have some success. I wear support hose, and do resistance leg excersizes in bed. I can sit up for a few hours each day, and when I feel a vascular headache coming on I eat salt and that does help sometimes. I usually drink gatorade mixed with water and benefiber, but when I get backed up I can only drink water because I get nauseous.

I'm really looking for general advice: what to look out for, what questions should I be asking my doctors, that sort of thing. I read some of the other pregnancy related posts and appreciated the warning about hypertension (I would never have thought that possible since my BP is so low), and the info on epidural and c-section vs vaginal delivery.

I'd also like to know if anyone has successfully taken beta blockers during pregnancy. If so, which ones? If not, is it because beta blockers are a bad idea? Has anyone had the kind of bad reaction that I had? Do other drugs have better effects for anyone? I know we are all different with our POTS, but I'd at least like some info to be able to suggest to my docs.

I know this is an essay and I apologize once again. This has been anything but an easy pregnancy for me, and I was kind of expecting it to get a little easier.

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Thanks for sharing your whole story, Wendy. It wasn't too long, promise! And it really helps to get a more complete picture of what's going on for you. I've had miscarriages and no sucessful pregnancies, but others have! And they will surely share their suggestions and experiences. (I know some things by listening and reading and learning...)

You can do this! Jessica/Ethansmom is delivering any week now (you might email or PM her) and I know she had a helluva time with nausea etc during her first trimester plus. Katherine and Amy/Calypso are two others who may be able to help ... actually, tons of women have figured out various accommodations and made it through to deliver healthy babies.

I do know that beta blockers are considered OK once you're past the first trimester if they are medically indicated and if your health and wellbeing is at stake. A cardiologist with an OB specialty told me this when I was going through in vitro. She also said compression hose (30-40 mmHg) were a must--and it sounds like you're doing that!

I started on toprol xl a few months ago and have my share of side effects (in addition to a somewhat lower heartrate :) ), but not the headaches you describe. If zebeta worked for you before, it makes sense to talk to your cardiologist and OB about adjusting the dose until you feel better (and if that drug has been approved under the circumstances.) You're gonna want to get your medical team talking to one another!

Keeping your bowels moving is going to be increasingly important as you get farther along in pregnancy--can you take colace or some similar stool softener? That might be something to talk to your doc about if increasing your fiber is making you otherwise sick. I sometimes feel like I could also pass out during a bowel movement, and it's so scary. I never actually have--but I do get intense shooting pains in my head at such time. Ugh.

Anyway--thanks for sharing your story. Best to you,

merrill

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Wendy,

Wanted to say welcome and so sorry that you're dealing with all of these things in your first pregnancy! I know exactly how it feels to just want to be a normal pregnant woman and feel like you can't enjoy the experience or look forward to having that baby. I didn't have many serious problems in my pregnancy until late in the game, but from early on I had bleeding, abnormal quad screen, etc., so I know how it feels to not being enjoying it.

Anyway, just wanted to say that I didn't take beta blockers during my pregnancy -- I actually developed POTS three days after delivery -- but I did breastfeed while taking them from 1 month postpartum to 1 year postpartum. I also consulted with 2 perinatologists (high-risk OB) and both said although it's optimal to be drug-free during pregnancy, it's more important to have your heart rate stable. The risk is that the baby tends to be smaller (I think by about one-half to 1 pound) and there can be heart rate decelerations in the baby toward the end of the pregnancy, but if you are properly monitored, that should be under control.

I have a history of anxiety and weaned off those meds during my pregnancy (I got pregnant on the first try and didn't quite expect that), but thought I'd share that with one of the medications -- called clonazepam -- one of the potential adverse effects on the baby is cleft palate. I am happy to report that my daughter does not have cleft palate, and upon doing more research, that the risk only goes up from something like 1 in 1,000 to 3 in 1,000. So you have to keep the adverse effect warnings in perspective. The drug companies have the responsibility to list ANY POSSIBLE side effects, even if they only happened to a few people.

My best advice is to make sure you're seeing a respected OB -- and perhaps get a consultation with a high-risk OB since your heart rate is involved. Also, again, please be aware of the symptoms of preeclampsia, which tends to manifest anytime after 20 weeks, but usually after 28 weeks. The Preeclampsia Foundation (www.preeclampsia.org) has a great site about this, and I also am a member of their forum. I'm not trying to scare you; I just feel a responsibility to make sure all pregnant women are well informed.

Hang in there and please lean on us! Feel free to privately e-mail or send a message my way, too. I'd be glad to share more about my experience.

Amy

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Wendy, Welcome. I echo calypso/Amy?s sentiments completely in that I know what you are going through and how hard it is physically and emotionally. You are fortunate in one regard?you already are diagnosed. I developed full-blown POTS during pregnancy (starting about mid-2nd trimester) and no doctor knew what was wrong with me.

I am glad you are seeing a new cardiologist who can hopefully answer all of your beta blocker questions. I did not take any medications, except synthroid (I was already diagnosed with Hashimoto?s) during pregnancy b/c I was undiagnosed, so I have never done research regarding medications and pregnancy. Again, I would rely on the advice of a doctor. I know in general that it is recommended that one be medication free if at all possible during the first trimester.

As far as what to expect?I think this is a big unknown for each of us with POTS and pregnancy. That?s why seeing a high risk OB-gyn would not be a bad idea, along with an electrophysiologist/cardiologist. However, again, I did not see either ( I was evaluated by a cardiologist at about week 26 and told that I had anxiety and needed to exercise more). Because I was undiagnosed, there were some things that were not done that should have been?like adequate hydration during labor. But, I survived, my daughter was born at 40 weeks+, and she is absolutely fine. Many POTS patients feel better and better as pregnancy progresses, although may feel worse again in the last weeks. This was not the case for me however. I felt best at the beginning of pregnancy, even when I had morning sickness.

How old are you? It is my belief that POTS patients do a lot better with pregnancy in their 20?s than in their 30?s. This is an unscientific belief, based purely on what I have observed on this forum.

Stay in touch and let us know how you are and what the new doctor says.

You can also e-mail me personally if you want to.

Katherine

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Interesting news! I saw my new gastroenterologist, and he seems both knowledgeable and helpful. He took me off the OTC stuff that my highrisk OB/GYN had me trying (colace, prune juice, enemas, fiber of any kind), and put me on an upper intestine motility drug (metoclopramide) and on "Miralax", supposedly a form of "Go-Lytely" that won't be absorbed by the baby. We'll find out the results in a few days, but hopefully I'll have a bowel movement that doesn't include hyperventilating. :o

In addition, he said that I too, like so many others I've been reading about on the forum lately, have CVS. I'd never have thought of that since I didn't have migraines before pregnancy, so thanks to all of you who have posted on it, it is good info. The motility drug, my prevacid, and the zofran are all being used to help empty my stomach in a timely manner and control both the nausea and the excess acid.

Seems like a LOT of meds to be taking while pregnant, but at least I know my OB and GI doc are talking to one another about it. I'll see the new cardiologist next Tuesday, so hopefully we can get my BBs straightened out then.

Katherine, I'm 36. I never tried having kids before because I was an "all work no fun" kinda girl in my 20s. Then I got POTS when I was 29, and figured I just couldn't have kids. It wasn't until about two years ago that I started regretting that decision and decided to risk it.

Amy, Thank you for your reply. I will read up on preclampsia just so I know what to be prepared for if it does happen.

Wendy

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I am also 36. I was 34 when my daughter was born. I think you are very brave going into this pregnancy knowing there might be special challenges and even risks.

The good news is that it does not seem that POTS is dangerous for a fetus/pregnancy [certainly the experiences POTS patients have had on this forum with pregnancy do not point to that], even though you may not feel well at all. Yes, definitely read up on preeclampsia. Even though you normally have low bp, you are at a higher risk for it just b/c of your age?and possibly also b/c of POTS.

It sounds like you have a good team of doctors. So important that they are all talking.

You WILL get through?and most likely feel better again.

Keep in touch and let us know how you are. We?re here for support whenever you need it.

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Welcome to the forum and congratulations on your pregnancy! I am currently 37 weeks pregnant myself, this is my second pregnancy after being diagnosed with POTS 3.5 years ago. Like yourself, I had extreme nausea and vomiting in the beginning (actually, until about week 16 with both pregnancies) which exacerbated my POTS symptoms for some time. I went off all my POTS medications when I found out I was pregnant, but ended up trying Phenergen for the morning sickness- which then sent me to the ER with a severe episode of tachycardia in my first trimester. I held on for a few more weeks without any meds and at the end of the first trimester I started on a beta blocker again, which has helped tremendously with my energy level and of course keeping my heart rate normal. I take Sectral (200 mg daily) and it has had little to no side effects for me- it can cause drowsiness but I take it at bedtime and have no trouble. My cardiologist mentioned that this is one of the preferred BB's for pregnancy due to it's safety- luckily for me it is the only one I've ever taken and it works well for me when pregnant. When not pregnant I take it in conjunction with Pro-Amatine to help keep my blood pressure up- but generally have normal blood pressure not affected by postural changes.

I will agree with Amy that beta blockers are preferred during pregnancy over having an uncontrolled heart rate- as long as they monitor baby closely. My first son was full term but weighed in at 6.0 lbs though perfectly healthy and still thriving. This baby is said to be a bit bigger so we'll see what he turns out to be. With both babies towards the end I've had the heart rate monitored carefully at each visit- instead of just listening for a minute, my cardio has my midwife listen for a baseline heartbeat then we stimualte the baby to make sure his heart rate goes up and comes down again normally. My first pregnancy the heart rate had trouble adjusting- it wouldn't go up as much as they would like- but everything was fine overall. This time everything has been normal thus far- I am on half the dose I was last time so I'm sure that makes a difference too.

I have found pregnancy to help my POTS symtpoms a lot, but I get so exhausted sometimes I wonder if I can make it until bedtime! I have a very energetic 2 year old though, which may contgribute more than anything. I am finding that at this far along (almost 38 weeks) that I am always out of breath, always exhausted, have to sit down a lot and generally just don't feel like moving LOL :) I don't know how much of ti is POTS related and what is normal pregnancy stuff, but it is pretty tough. I am ready to get it over with ;) I wish you the best in your pregnancy and hope that things go well for you, and you can find a remedy that works. I have found, especially with summer here and the heat- drinking an electrolyte drink first thing in the morning helps me get going and gives me some energy too. Good luck!!!!

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Regarding weighing the risks of whether to use a beta blocker or not during pregnancy, it is important to get an opinion from an electrophysiologist and high-risk OB. I guess this has already been stated. I don't know what the definition of an "uncontrolled heart rate" or a "stable heart-rate during pregnancy" is. Mine would go as high as 160 bpm during bad POTS episodes, but usually not much higher than 120 bpm. And I had a lot of ectopic beats that were very disturbing. These conditions did not concern my ob/gyn, nor any other doctor who evaluated me--even though I had read in numerous sources that it is important to keep heart rate below 140 bpm during pregnancy, whatever that means exactly. They all felt the risks of using a beta blocker outweighed the benefits for me (given--I was undiagnosed, but the tachycardia was observed.) So, anyway, what I am saying is, each of us has at least a slightly different set of circumstances, and you will want to rely on the advice of your physicians.

Take care Wendy!

Katherine

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