Hyperadrenic POTS

[Bluebonnet08]

Hi Everyone,

I have been reading about Hyperadrenic POTS and wondering if that is what I have.

If you were diagnosed- what was the criteria that they used?  What are your symptoms like and how do they differ from normal POTS?

When I have "attacks" or "episodes", they come on suddenly, sitting or standing..... my heart rate elevates to approx. 150bpm, I feel like I can't breathe, feel like I am dying every time with a horrible sense of impending doom.  Usually my heart rate goes down after about 10, sometimes 15 minutes.  Does this sound like hyperadrenic POTS or just regular POTS?

Sorry for all of the questions... my symptoms have always been bad, but getting so much worse with this pregnancy (almost 31 weeks).  I had a terrible episode yesterday that lasted a long time.  I get so much anxiety from them and don't understand why they are so bad.

Thanks for any help.

[Pistol]

First of all - you are pregnant, so all of your POTS symptoms will be much worse. Second - I have hyperadrenergic POTS. My symptoms were always similar to what all of us experience but My BP goes up when my HR goes up. Also - my norepinephrine levels were very high when they checked them with a blood test. I think it is best to just realize that we all have dysautonomia rather than categorizing it. The symptoms are all similar - it is just the cause that is different. We all go through the same thing - let the docs come up with classifications or sub-groups or whatever they might want to call their theoretic battles. In the end WE are the ones who struggle with the symptoms and they are usually pretty much the same, no matter what the label might be. 

[Bluebonnet08]

Is there a fast way to calm it down or get through it?  It's getting so bad and I feel like I'm going to die every time, although I've been through it so many times and logically I know I won't

[p8d]

I had many similar symptoms.  After my catchecolamines test came back with high norepinephrine on standing I was put on methyldopa which helps a lot.  My PCP told me it is an old drug and safe even for use during pregnancy.  You might want to check with your Dr and ask about the blood testing as a place to start.

[Pistol]

When you go through an episode it always feels like your going to die. I am sorry that you have to go through this on top of being pregnant. Just remember that it ALWAYS gets better.

[MomtoGiuliana]

I also had these symptoms while pregnant--which is really when full blown POTS began for me (I was not diagnosed until my child was 4 months old).  It's good, at least, that you know what it is.  I found that drs had no idea what to do with me and didn't want to diagnose me with anything (except anxiety) bc pregnancy always complicates things.  I did find that iv fluids helped--which I was given a few times during pregnancy.  Also fluids in general.  As I recall my symptoms were at their worse around 32-35 weeks.  My doctor was even thinking I should be induced early.  Then my symptoms improved thru 40 weeks.  After birth my symptoms were even worse.  Everyone is different.  Fortunately with a diagnosis you can get faster attention and treatment than I was able to.  Eventually I started a beta blocker and low dose SSRI and after another 6 months I was pretty functional again.

[Bluebonnet08]

Thanks everyone. 

 Mom to Giuliana- I am almost 31 weeks now and my symptoms are at their worst.  A few weeks ago I was doing much better.  Now, I can barely walk into a store without setting off an attack.  It's getting a little scary how quickly my HR is increasing and how high it has been for simple things.  It was much, much better before this period in my pregnancy.  It encourages me a little that your worst symptoms were 32-35 weeks.  I'm hoping that mine will get better again and not stay this way until I deliver.  It's so scary.   After I deliver I hope I can get an appointment at Vanderbilt.  I am currently getting 2 IVs a week which were helping, but now aren't helping very much.  Baby still seems to be healthy, which is good.  

[MomtoGiuliana]

That's good that you can get regular IVs.  I believe that would have helped me a lot.  

I was disabled enough that I left work at 32-33 weeks.  

 

 

[Bluebonnet08]

Mom to Giuliana- what were your main symptoms that caused you to leave work?  Elevated heart rate?  Did it improve a lot after 35 weeks?  

[MomtoGiuliana]

The disabling symptom was extreme fatigue/weakness.  But I also had very elevated hr.  Like I said this peaked around 32-34 weeks.  It did not improve a lot but it did improve after that to the point I could be more active--I did not go back to work however.  But like I said became a lot worse in the post partum time period.  Again I was undiagnosed.  I truly think if I had been diagnosed and under the care of specialist things would not have spiraled the way they did and I might not have been so disabled for so long.