POTS and pregnancy

[niknlee]

I was diagnosed with POTS in 2007 after I had my daughter. I had my son in 2008 and I started having more problems not necessarily with blacking out but with swallowing difficulties. It has been getting better. I just want to know if people generally get worse after having children. I would like to have more children but my electrophysiologist told me my condition could worsen and now I am hesitant. I get very depressed when I think that it is the end of the road with childbearing. I would appreciate any feedback. I truly want more children and I don't know where to find information on this.

[charmedgirl]

    When I was first diagnosed with POTS I had to go the hospital for this or that test (mainly to rule out other heart problems) about once a week for a month and a half. It was a pain.
    You really just need the tilt test though, and they can do that in a single day. But then there are follow ups to read the tilt, and get medication and check how you're doing on the medication.  Good luck! I am so tired of going to the doctor.  I'm glad I found this group.  I was diagnosed in October, a month after getting married ( after fainting a few times in the months before the wedding) and we want to get pregnant.  I'm so exhausted now though, and frequently feel car sick. I can't imagine what being pregnant will be like. How do people with POTS keep a job? I've got the compression stockings (annoying) and I tried fludricort but gained weight so now I'm on midrodrine.  I seem to be doing all right with that as far as the fainting goes, but I can't say I really feel a whole hell of a lot better.  I add salt to everything . . . . And I seem to do better on days when I drink over 64 ounces of water.  
          Any other tips to manage symptoms would be much appreciated.

[Heiferly]

I don't recall how frequent my initial visits were with my cardiologist that oversees my POTS care, because it's been a while (several years) and we're fairly settled in at this point.  My situation was pretty different from yours at any rate because I didn't have a diagnosis yet at all so I was seeing docs from multiple specialties at the hospital concurrently and having scads of tests done.  Perhaps someone else on here will chime in who can give you a better idea of what to expect starting up with a new cardiologist at a teaching hospital?

On a maintenance basis, I see mine once every 3 months unless something is going wrong and I need to go in sooner.  (My general practitioner pages my cardiologist if there's anything urgent, like if I may need to be admitted to the hospital or if he has any questions about how to handle something.)  I am also in contact with him over phone and email as needed.  

[dmolina]

I went back to my 1st cardiologist today an she prescribed the compression hose. I haven't taken it to get filled yet but hopefully they will work.

[dmolina]

Yeah, he told me he knew what it was suppose to be, but that it isn't real. I was soo mad that all I could do was start crying. Darn pregnancy hormones.

[niknlee]

I definitely say find another cadiologist or atleast ask him to research it. It is so frustrating when Dr.s don't even know. I went to my family Dr. yesterday and he thinks it is all psychological.  I think I am going to print him up some information about it. I really like him as a Dr. but I am pretty frustrated at the moment.

[dmolina]

Thank you for the information. You've been more help than anyone else. The cardiologist I saw wasn't at a teaching hospital. I wished that we still lived in Houston. At least then there are more options. I am thinking of going to the teaching hospital there the next time we go to visit family. How long should I plan on being there? Is it just a one day thing or will they want to see me back in a month? And how often should l expect to go?

[Heiferly]

The first thing you need to do is find a different cardiologist.  I'm so sorry this happened to you; I can imagine how angry and frustrated you must feel.  Was this cardiologist out of a major teaching hospital?  It looks like the two best hospitals in your vicinity are in Albuquerque and Santa Fe:

http://health.usnews.com/health/best-hospitals/heart-and-heart-surgery-hospital-rankings/name+/state+NM/sort+rank/page_number+1/page_size+25

(Unless you are willing to go out of state to look for higher ranked hospitals.  I only searched in your state.  You can use that website to search for other nationally-ranked hospitals if you want to look elsewhere.)

As for compression hose, they should be fitted at a medical supply store by a professional to ensure proper fit.  Most of us with dysautonomia wear 30-40 mmHg compression, but perhaps they use the lower compression for pregnant women, I'm not sure.  The doctor's prescription will have which grade of compression they want on it so you won't have to choose yourself.

[dmolina]

Well..apparently by the cardiologist I saw today, POTS is made up. It doesn't even exist. And my heart rate was going up when I stand because the baby has to be on my blood vessels. What a load of ****. I don't know what to do now.

[niknlee]

I hope you get some answers at  your appt on Tues. You will have to let me know how that goes. I know there is a specialist at Mayo who knows a lot about POTS. I can't think of his name but I would like to see him. As far as the stockings I had a prescription from my electrophysiologist. I would see if you could get a script from your Dr. and insurance could pay for some if not all. I got the thigh high and they are 20-30 psi- that just means the pressure. They are kind of annoying at times and not the prettiest things to wear but they definitely help. They will also help if you have problems with swelling too. Good luck at your appt.

[dmolina]

I was diagnosed in February, about 1 1/2 weeks before I found I was pregnant, but I remember the earliest blacking out problems when I was about 12. It got worse when I was 17 and my mom passed away. I defently am worse since I got pregnant and getting worse the farther I get. I wasn't able to get the epidural with my other 2. The oldest I didn't want it, and the 2nd my blood pressure went way up, and her heart stopped. I live in a small town, and I can't find any answers to any of my questions. The cardiologist I had was in a different state so my ob  had me change to one here so I will see him on Tuesday. I hope this one knows at least a little bit about POTS.The closes Mayo clinic for tilt table testing is 8 hours away but so far no one has sent me. Where do you get the stockings?

[niknlee]

Yes they knew about it while I was pregnant with my son. My OB didn't do anything different but my POTS didn't worsen throughout the pregnancy- just the normal blacking out and fatigue. I just seem to have more dysautonomia symptoms now 9 months after my son was born. I must say I had trouble with the epidural and drop in B/P you might want to talk to your OB about it. The scary thing is is that most Dr.s don't know what POTS is. I know more than they do. I just don't want to get worse. I wish there was a definite yes/no answer instead of it is a possibility. When were you diagnosed? Do you wear the jobst stockings?- they help me. I hope you start to feel better :)

[dmolina]

I am currently trying to find the answers to that question myself. I am 27 weeks pregnant now with my 3rd, and this pregnancy has been the worst. I am tired all the time and have alot of chest pains, along with being very faint. My heart rate all day today has been averaging 130. I've done what research I can about POTS and pregnancy, which isn't much. You said you where diagnosed before your son was born. Was there anything different your ob did for you? Mine has never heard of POTS before.