Electrophysiologist

[Bluebonnet08]

I have been on a heart halter for a little over a month with my cardiologist.  He wanted to record my episodes since they have gotten so much worse in the last trimester of my pregnancy (I'm now 33 weeks).  Today his nurse called and said there was nothing he could do for me..... she said and I quote "POTS is too complicated"....... so, he is referring me to an electrophysiologist, which may take a month to get in with.  It's so frustrating because my symptoms are only getting worse and worse.  I think my POTS was managed quite a bit, but the last few weeks, I feel like it's been going haywire.  The episodes are more frequent (every day, sometimes twice a day), my HR will just randomly go up to 150-160 and I will feel a feeling of impending doom.  I've also been getting some anxiety associated with the episodes.  I don't know how much are hormones, but it's been quite scary.  

Has anyone had any luck with an electrophysiologist?    Also, no one can advise me on my IV schedule anymore... I was getting 2 a week, but it seemed to be making things worse.  I am just at such a loss right now.  

[MomtoGiuliana]

It sounds very similar to what I experienced in mid to late pregnancy.  I think I mentioned this and also that I was undiagnosed.  I was told that nothing could be sorted out bc pregnancy complicated everything.  (Then post partum I was essentially told the same thing!).  Hopefully an EP can help.  Sorry the IVs are not helping.

If your situation takes the course mine did I did feel a little better in the last month.

[Bluebonnet08]

Thank you so much for your support.  I did not realize it would get this bad, but I should have known that POTS is unpredictable!  It was fairly well-managed until the last couple of weeks.  Fortunately my husband has been able to work from home a little bit to help me through this rough period.  I am really hoping it will improve towards the end like yours did!  

I was pregnant 5 years ago before I had a diagnosis, but didn't have these side-effects until the last two weeks.  I'm not sure why they are occurring early now.  I also had increased symptoms post-partum, but they weren't as severe as during the pregnancy.   

[MomtoGiuliana]

POTS and pregnancy unfortunately are both not predictable. Hope you feel better soon.

[Pistol]

@Bluebonnet08: When I first got sick I was seen by 5 cardiologists, 2 of them Electrophysiologists. They had NO CLUE about POTS and did not want to bother with it either. It is important that you request an EP with experience in dysautonomia. I had to go out of state and found the wonderful Dr Blair Grubb in Toledo who saved me by diagnosing me and patiently and knowingly spending years to find the right treatment. He is a EP. So - there are good EP's out there but be specific in requesting one that knows about POTS. Good Luck - I was just thinking about you the other day, wondering how you were getting along. 

[Bluebonnet08]

Thank so much!  I've had a rough few weeks.  My POTS had actually been fairly stabilized for a little over a year.  The past 3 weeks I feel like it has destabilized and it's been so much harder to control- very frustrating.  Before the pregnancy, it had been a year since I had an attack and now I'm having around 2 a day.  My HR is also up from doing something really simple.  I'm currently at 33 weeks pregnant.  I can't wait to have this baby.   The OB-Gyns don't "get" it at all.... it's very difficult.  Fortunately my husband has been very supportive and I am just trying to take it day by day.