Pots Pregnancy Guinea Pig

[calypso]

I guess I'm not going to be one of the lucky POTS patients who feels better during pregnancy from all of the extra blood volume. Aside from horrendous nausea (which I didn't have with child #1), I am having an exacerbation of my POTS symptoms, especially shortness of breath, tachycardia, fatigue (beyond the normal fatigue from pregnancy), digestive issues, sensitivity to noise, and weakness. Another weird thing is that I already am experiencing swelling in my legs on occasion, and my blood pressure is low, if anything, so it's not because of high BP. I guess I've always had water retention problems, but I didn't expect them to worsen so quickly.

Most days I can do little more than prepare some meals and take basic care of my toddler. I can barely go for a walk without feeling like I'm having a heart attack or becoming exhausted, which is frustrating because I have always had luck with exercise making me feel better.

I see my OB for the first time the first week of October and will bring all of these things to his attention. I feel so bad for him, because I'm going to really make him work for me, compared to all of his "normal" patients.

I'm hoping that when I get out of the nausea phase, that things will improve. They have to improve, right?! Just thought I'd update, because I could use the support and also because I know several here have asked about what pregnancy may be like for someone with POTS.

Amy

[taylortotmom]

Oh, gracious I hate that you are already having a tough time. The first three months of both of my pregancies were exceptionally hard due to the nauseau. Some people benefit from sea-sickness bracelets (?). Hopefully, your doctor can find you an acceptable treatment. I swear by peppermints and ice cold water- they have saved me repeatedly with nausea. Drink ice cold water and eat peppermint after peppermint. I don't know why it works, but it does.

As far as already retaining fluid- your body is working twice as hard. Actually, three times as hard because the illness makes our bodies work double-time and with a little one on board.... yeah, your body is in overdrive. However, you do need to be conscientious about preeclampsia. If you normally run a real low blood pressure, you can be preeclampsic without having high blood pressure- it's the change that is indicative. My blood pressure went up thirty points and I had a real bad experience with my first pregnancy. But, your doctor will take readings every appointment and hopefully stay on top of this- I did want to mention it as you are already having swelling.

I hope you have a wonderful, compassionate OBY. As a generality, they are usually the more caring doctors. Hopefully, your doctor will welcome the opportunity to take as much time with you as needed and if not, to get you to someone who does have the time and knowledge to handle a "complicated" case. Good luck- can't wait to hear more from you about this exciting time!

Carmen

[Guest dionna]

thank you for sharing with us your experience. i am excited for you! i really do hope that you have a great doctor that will help you out as much as possible! if excercise isn't helping you now, i hope that you find something else that will. take care and be careful.

dionna

[MomtoGiuliana]

Amy

Sorry you aren't feeling as well as you hoped. This condition is hard to make any predictions about. Try not to project what the future will or might be with this. It does seem that many POTS patients feel worst in the first trimester and then slowly feel better. Hopefully that will happen. Your body is working really hard now on expanding blood volume. Hope you have a good experience with the OB/Gyn.

Katherine

[DancingLight]

Amy,

I have been wondering how you were feeling...and I am sorry to hear you are having such a very hard time. I hope Katherine is right in that perhaps you might feel better after getting through the first trimester! Ugh!

I know how much you want this little one, and I hope that you will be able to find some things to make this pregnancy more bearable!

Emily

[corina]

amy,

don't feel bad for your OB, it's not you're fault you're having so much trouble! and maybe he'll find it very interesting and will do the very best he can to help you!!!

like emily, i was wondering how you're doing so i'm glad you wrote this update!

imagine how proud your number one will be when she is the oldest after the baby is born!!! i remember my oldest son when we went for a walk with the baby in his pram. he asked (in fact: ordered) everybody to have a look in the pram and watch HIS babybrother. when someone didn't look at the baby he got really mad as he couldn't understand why people DIDN'T want to have a look!!!

i'm sure things will improve once your body is getting used to being pregnant!

corina

[mom4cem]

sorry you are not feeling so well. I don't know how far along you are, but with any luck you will past the 16week mark and notice an improvement in naseau. As for blood volume, usually you notice the increase by the 22nd week, once again I don't know how far along you are, so maybe if you have not reached that mark, you perhaps may feel better.

My first was horrible with heartburn. My second pretty good. My third, well there I was on bedrest for 2months, my ankles and legs swelled which I never had before in either pregnancy but, this was the first time i was pregnant during the summer months so the weather could be a factor for you also.

Hope you feel better soon, and as for your OB,,hey, if he is worth anything then he will listen and do anything and everything he can to make this as smooth as possible.

[yogini]

Hi Amy,

No advice here, but just wanted to say congrats on the pregnancy. When are you due? My sister is almost 9 months along. She had terrible nausea during her first trimester, but it has been smooth sailing after that (though she doesn't have POTS). I hope you'll feel better as time passes.

-Rita

[anna]

Hi Amy,

I had quite a few problems much like you discribe, during my second pregnancy. We found out why when it came to my first scan at about 17 weeks, as clear as day we could see TWO little hearts beating. Prior to that we thought I was just carring one baby as our twins hearts beat as one and our mid wife could not hear two diffrent sets.

So could you be having more than one baby I wander!! I hope I have not made you worry.!!

Hope all turns out ok, take care,

Anna

[calypso]

Anna -- Two babies? My goodness. I did have an eight-week ultrasound ... I'd hope that would differentiate between one or two babies, but who knows? I suppose anything is possible.

I think I just have to accept that I probably won't feel as good as last time around because I didn't have POTS then and now I do. And hopefully things will improve in the second trimester; they usually do for most people. Even if they don't, at least I know that in seven months this will have to be over!

I'm currently ending my 10th week, for those who asked. I'm due April 21. So I am at my peak for nausea and fatigue.

Corina -- I think my daughter is pretty excited about the new sibling, except she told me she only wants a sister! I know she will be fine either way, but I thought that was funny.

Carmen -- I did have preeclampsia last time, so I am very, very familiar with every warning sign, and my OB is watching me very closely. I know that last time my BP gradually climbed, and because it started so low, I think my midwife did not take my increase as seriously as she should have -- which is why I have a doctor this time. But preeclampsia does not occur until after 20 weeks, according to every authority on it. If my BP goes up before that, it would be considered plain old hypertension and treated with medication. But so far no increases, just swelling that for me is not totally abnormal; I've retained some water ever since I had my daughter, and my doctors have no idea why except that they think it is somehow POTS-related.

Thanks for all of your support.

Amy

[taylortotmom]

Glad to hear you have a doctor who appears on top of things. Hang in there- let's hope next trimester is a little easier! And a very big- congratulations!

Carmen

[anna]

Hi Amy,

I did not get to have a 10 week scan, for some odd reason they missed me out on the 12 week scan list, thus got to 17 weeks without knowing, divin intervention I guess!!

You might find a mild ginger tea might help with the nausea, take care,

Anna

[bttrflyamby1981]

I hope you improve while your pregnancy progresses. Nausea was really bad for me with both my pregnancies. They had to give me supositories(sp) to stop the vomiting. It did help to keep at least water down. But ginger ale was also a great help. It's the ginger that does the trick.

Good luck and best wishes!

Amber

[masumeh]

I was also hyperemic during both my pregnancies. There are two meds I was given, one called phenergan (sp?), which is the cheaper and first line resorted to by HMOs, it also has more side effects and left me in total convulsions; I was allergic. The second was helpful for me, called Zofran, but it's very expensive and HMOs only give it if you twist their arm or need it by reason of allergies to Phenergan. Zofran is great, but a side effect is constipation. I took it through the seventh month, then my OB told me to wean off because it's only suppose to be taken first trimester. Anyway, I had the shots, supposotories (sp?), pills, plus of course IVs for fluids. I was one pound away from TPN, when thank God, I finally managed to start eating. My advice for nauseous pregnant women (unlike any other source of nausea):

Eat whatever you want! I think cravings are adaptive, i.e. your body telling you what it needs.

Suck lemons! This sounds weird, but it takes that "empty stomach acid" nasty smell out of the mouth.

Ginger Ale! Or 7Up, Sprite, whatever. They all work just about the same. But go slow.

Don't cook! Cooking smells are totally bad for nausea.

Stay away from rice! It gets stuck in your nose. EW.

(My OB suggested ginger tea or any other ginger product due to recent research about ginger relieving nasea, but this did not work for me.)

Hope this is helpful.

Masumeh

[crazyblue]

Hey there. I'm new to the forums but not new to POTS. I'm currently 28 wks pregnant and just wanted to offer my support.

I have been suffering from POTS for years now (undiagnosed) until April of this year. 3 weeks later I found out that I was pregnant with our surprise 4th child. They figure the pregnancy/birth of my last child triggered the downward fall but since I was on an SSRI for post partum that I masked it until I went off last summer.

It has been a rough ride. The first 12 weeks of pregnancy I was practically bedridden and I needed IV fluids to help maintain my hydration so that my symptoms wouldn't get so bad despite being on an SSRI. I finally stopped getting sick around 18 weeks but started feeling better after 14 weeks (no IV Fluids by then) I'm now in my third trimester and I feel soooooo much better! I'm back at work and almost back to normal. (If there is such a thing for someone with POTS) I'm having a c-section in early/mid december depending on how big this little one keeps growing.

I am also in contact with another woman whose had 2 children while she has POTS and the same happened to her. Very rough begining but did get better eventually.

I know this isn't going to help much right now but things will get better. It's hard when you feel so sick at the begining to think that there is an end in sight but it will all be worth it when you see your beautiful baby.

I'm here if you need anything or have any questions. I'll keep you posted as well so that you know (hopefully) what to expect.

[calypso]

Thanks for sharing your experience, Christina, and glad you finally got a proper diagnosis. It's good to hear positive stories related to POTS patients & pregnancy! I seriously have no idea if things are going to get better or worse, but I am obviously thinking and hoping they'll get better. I am having some trouble keeping my heart rate down, but my doc does not want to medicate me w/ beta blockers unless I am extremely symptomatic (he said unless I have significant periods of chest pain, shortness of breath or fainting, no meds). My heart rate is often in the 100s and up to 120 from light activity; I'm just hoping I can keep it here and not have it going higher as the pregnancy progresses.

Keep in touch and let me know when you get closer to having your baby! Do you know what you're having?

Amy

[crazyblue]

Hey there. I'm sure it will probably get better for you also but be prepared for days when you don't get neough sleep for things to act up really strongly. I work as a nurse shift work and just tried night shift for the first time in over a year (had been off sick for a year) and let me tell you the lack of sleep really made me feel horrible with bad bouts or tachycardia last night. I ended up having to go back home. Drink lots and get plenty of rest, which I know they always tell you. It's hard when you are getting closer to the end and you can't get comfy and then the baby kicks that baggeebers out of you! lol

I do know that we are having a girl! This has actually been the best that I've felt in a very very long time. I even feel better then my other pgs! My BP has stabilized from what I can see but I still have days where I get tachy doing very little. My light activity HR is also in the 120's but when I get really bad (like last night) it will go as high as 150's. I feel so horrible and tired afterwards too. I'm currently taking Celexa for my POTS and it has been a life saver! I can function at home and take care of my other children too. My POTS was also post-partum onset so I was really nervous as to how my body would react to all the changes. Have they ever wanted to try you on an SSRI? The side effects are minimal and very low for baby too.

The only thing I'm worried about now is how I'll feel afterwards. I'm so worried that the fluid fluctuation is going to put me back to were I began. I saw the OB friday and now b/c the baby is so big already (weighing approx 4lbs at 29 weeks when she's supposed to be just under 3) they are moving up my section date to most likely Dec 6th. Unless he's on call that weekend.

I can't wait to hear more about your pg as it progresses. How many weeks are now? Could you ask your Dr for saline IV boluses? I know they made a world of difference for me. I still had episodes but they were so much more mild then before. Are you getting sick a lot? I tried Diclectin but WOW that threw my BP so low that it was very dangerous so I only took one dose of that. I lived on Gravol. LOL I hope that things start looking up for you soon too. There is an end in sight even if it doesn't seem like it now. I swear that I thought it would never end. lol

[crazyblue]

Just checking in to see how you are doing. I'm finally booked for my section. It will be on december 11th. I'm so nervous as to how my body will react aftewards to the large fluid shift. I'm trying not to worry about but how can you not. any relief is your symptoms yet? Hope you are feeling better.

[DancingLight]

calypso,

i'm glad christina pulled up this post...b/c i had been wondering how you were doing also....if you're able to check in let us know!

christina,

welcome aboard and i am glad to hear you are doing well with your pg now. and a little girl! we can always use more of those! alll my friends seem to be having boys!

emily