Newly Diagnosed With Questions

[Mamawithpots]

I am new to this group and would like to introduce myself. I am in my early 30's, married, mother of two almost 3. I am in my last trimester of this pregnancy. I was diagnosed with P.o.T.S about 2 months ago after my symptoms showed up out of no where. I am grateful to have a diagnosis, I thought I was a crazy pregnant person imagining all of this.

I would be grateful for any advice or personal experiences you could share with me. It has been difficult to get through this pregnancy, and my mobility has been very limited. I have been put on bed rest, except for my many doctors and hospital appointments each week. I am not on anything to treat my PoTS, as my doctors do not feel it safe while I am pregnant. (I have a hard time staying pregnant even without PoTS) I have a few questions, if you have any thoughts or advice I would appreciate it.

For those of you who have PoTS and were pregnant, how was your delivery? Did your heart handle it alright? Did your PoTS go away after the baby was born?

Are there any techniques for slowing down your heart rate? I am not on any meds, but would love to know if there are ways to handle my symptoms until I can get on meds. Similarly, can you do anything while feeling the symptoms (dizziness, brain fog, ... etc.), or do you just have to wait until they go away?

Do you have any good advice for someone who is newly diagnosed. Any tips, etc?

Also, my doc and cardiologist do not have personal experience with PoTS, should I try to find a specialist?

I am glad I found this forum and website and do not feel so lost and scared. Thanks for reading, and for your help!

If you are interested in my story and diagnosis, you can read more about it at my website. It is not a PoTS website, just my regular blog where I included a post about it. http://focusedonthepositive.blogspot.com/2014/03/learning-how-to-live-with-physical.html

Thanks!

[BeforeTheMorning]

Hi,

Nice to meet you. I was diagnosed with POTS last year and I'm now on medication. But there are also other things that help with symptoms like drinking plenty of fluids, I try to drink 3 litres every day. Some people also say to try drinking around 500ml before you get out of bed in the morning as that can help your heart rate not to climb quite as high. Compression socks can help if you have bad pooling in your legs, they help to pump the blood back up so your heart doesn't need to go so fast. I find that limiting my refined sugar/carbohydrate intake can help me not to feel so bad as well. Hot environments can make me feel really bad, so I try to avoid them too.

There are so many great people on this forum so probably someone else will come up with something a bit more helpful.

Wishing you the best,

Lyla

[Mamawithpots]

Thanks for your suggestions and encouragement! I am drinking plenty of fluids and a salt diet, which is helpful. I didn't know about drinking before getting up, that's the worst time for me so that is very helpful! Thanks Lyla, I appreciate it.

[MomtoGiuliana]

Welcome Mamawithpots

I had POTS during my first and only pregnancy. It became pretty much progressively worse as the pregnancy went on, and I was even sicker postpartum. But everyone is different. I was also not diagnosed until 4 months postpartum -- so no dr was advising me on treatment, etc. (I was told I was severely depressed).

B/c pregnancy presents a special situation, it would definitely be best to talk to your doctor--but I do remember that I felt best when I was adequately hydrated. I got saline IV a few times during pregnancy and each time would feel almost completely normal for 2-3 days afterwards. I didn't understand why at the time, of course. Even tho I was undiagnosed my doctor was concerned I might not be eating enough protein or fat (I am a vegetarian although was eating some meat and eggs and dairy). He told me to increase my protein and fat intake--this did seem to help my symptoms, a little. But by 7 months I was unable to work full time and some days was bed bound.

Being diagnosed should help a lot as you progress and also post partum.

[IceLizard]

Hi Mamawithpots,

I was pregnant with my son two years ago and my POTS worsened during pregnancy. It turned out I was anemic and that was making it worse. Once that was corrected I felt much better. Towards the very end of pregnancy my POTS improved, I assume because I had so much extra blood for the baby.

You may ask about IV fluids during delivery because as you know you are not supposed to have anything by mouth. I had a normal vaginal delivery that was augmented with Pitocin because my contractions stalled. I have exercise intolerance and labor was difficult because I felt I could not catch my breath and get enough oxygen. What really helped was O2 given during delivery. It calms you and helps you get enough O2 even when your circulation is off.

Post partum was very difficult I assume because I lost blood volume and my hormones changed. I took it easy and rested when my baby rested. I did eventually return to my "normal," but it took some months.

POTS can be triggered by pregnancy and in some cases can resolve later. This article may help put some fears to rest: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2894719/

Happy pregnancy

[Mamawithpots]

Thanks for sharing your experiences. I also am anemic, and have gestational diabetes (I get it every pregnancy). The doc did mention admitting me the night before we induce to get hooked up for fluids and be watched. They want to do another echocardiogram that night as well, and have the cardiologist highly involved. I am glad you mentioned something about oxygen during labor. That is very good to know!

My docs keep saying that hopefully as soon as the baby is born my body will go back to normal, so I am glad you guys are telling me it might take a few months. It's nice to know that before hand. They are also saying that as soon as I can they want to go full speed ahead with taking care of my heart, doing all the tests, meds etc. that can't be done while I am pregnant. I don't know what all that will be, but look forward to getting a closer look at my heart.

I am still worried about delivery. My heart can hardly handle any physical activity, and I don't quite understand how it will be able to handle the stresses of labor. I have nightmares of it just giving out in the middle of labor, especially with all the chest pains I have when I am doing hardly anything.

I'm sorry to hear about your difficulties, but grateful for the help your experiences are for me. Thank you so much!

[Chaos]

Hi and welcome. Sorry you are having such a difficult time with this pregnancy.

I didn't have POTS when I had my pregnancies but I did have very complicated pregnancies and spent a lot of time on bedrest. Be aware that even without POTS, after being in bed for a long time you can have POTS type symptoms (tachycardia, palpitations, lightheaded, sweating, etc) when you start trying to be up again. Having POTS on top of that may make it really interesting trying to get back on your feet.

You might consider asking your doctor for some home care Physical Therapy to start on some exercises in bed while you are still pregnant to help maintain some strength and muscle tone in your legs at least so that when you're ready to be up more you have some muscles left there to assist the skeletal muscle pump. There are some PTs who specialize in Women's Health so trying to find one of these would be best if you can find one. They would be most knowledgeable about what safe exercises you could do while pregnant and on bedrest. They could also help you with some gentle breathing and stretching exercises that might be beneficial to you as well.

Once you have the baby, try to be patient with yourself as it will likely take time to get back on your feet. The combo of POTS plus deconditioning from bedrest is going to be a challenge so be kind to yourself and know that this might not be just like your other pregnancies where you could bounce back as soon as you had the baby.

When you say your heart can hardly handle any physical activity is that because of the tachycardia or what do you mean by that?

I'm curious how your doctors diagnosed you with POTS? Did they do a poorman's TTT? Have they ruled out other cardiac problems?

Best wishes!

[Mamawithpots]

Thank you so much for all of your ideas! When I say my heart can hardly handle activity, I mean my heart rate goes up so fast when I stand, sit, walk, etc and my body feels like it's going to collapse and give up if I do those things for more than a few minutes.

I was diagnosed with pots after being sent to the local cardiologist from my pcp. He listened to my symptoms and noticed my reaction to standing. He had me sit down then stand up like 10 times while checking my HR ,and had me on a heart monitor for a few days. I did not do a tilt test. I've also had EKG's and echocardiograms, blood work, and I can't remember what else. It was a quick diagnosis, but I feel like pots matches my symptoms perfectly. I do also have a valve problem (my mitral valve) but I've known about it for years and the docs are never worried about it.

My pcp wants to do lots of tests and things after the baby is born to do further investigation on my heart. I guess due to my pregnancy, I could not have many of the tests they would normally do.

Thank you again, I appreciated everything you said!

[Mamawithpots]

I'm still curious about those of you who had Pots during a pregnancy. Please let me know how the delivery went, and how your symptoms were after the baby was born. My docs hope that since this came to me during the pregnancy that it will leave shortly after the baby is born. Don't want to get my hopes up if that is not realistic.

[Mamawithpots]

I am going in this week to meet with some Maternal Fetal Specialists for my pregnancy. Is there anything specific I should ask them about my Pots and pregnancy/delivery??