Just had my autonomic tests and hemodynamic.

[LindaJoy]

Hi, everyone. Just wanted to let you know that I just got back from having my hemodynamic test with echocardiagram, and my autonomic tests: sweat test, ice water, sniff test, blow test, and some sort of adrenaline through my IV test. I didn't respond, at all, to any of the autonomic tests. My blood pressure may have gone up a little, or dropped a little, but not much. What does that mean?

Now, during the hemodynamic test, I nearly passed out again, right at the end, when I'd been sitting for quite awhile. In fact, I think I probably did black out for a bit. The nurse said that wasn't very normal with this test. The tilt, yes, but not the hemodynamic. What does THAT mean?

I'm supposed to meet with my doctor tomorrow, to talk about the results, but if any of you can help me to be prepared for what she's going to tell me, I would greatly appreciate your input.

I'm still at the Cleveland Clinic. The guest house offers us free use of a computer, but we have to share it with all of the other guests, so I'm hoping I can make it back on before I see the doctor tomorrow.

Any questions I should be sure to ask her?

Thanks, everyone.

LindaJOy

[Ernie]

In what part of the test did you pass out?

What were they doing during the hemodynamic test (besides you sitting down)?

Ernie

[LindaJoy]

Hi, Ernie,

It was towards the end of the test, after I'd been sitting up, with my legs dangling off of the table, for awhile. It was like the tilt table--my blood pressure began dropping and I just went black.

I'm really nervous that my results weren't normal POTS. Can you shed any light?

Thanks. Linda

[Ernie]

Hi,

I don't know what were the result of your tilt but if your BP dropped because you were sitting with your feet hanging you seem to be having some kind of orthostatic hypotension.

I would ask what did the nurse mean in saying that this is not a normal reaction. Does she mean not a normal reaction for a healthy person?

You might have been having a "good" day or maybe your reacted and did not feel the symptoms. A couple of times I fainted during those tests and I did not realise until the doctor told me so (I was laying flat on the TTT and my BP went to 25/25.

What are your usual symptoms when you are symptomatic? Did the tests mimic any of them.

I think the hemodynamic test is to measure blood pooling or blood volume. You don't need to feel anything for this test to be positive.

Maybe you have normal NCS.

Good luck with your consultation tomorrow. Maybe you could ask them what was your lowest reported HR and BP and what is your blood volume.

Ernie

[Gena]

I've never had any hemodynamics tests that im aware of, even when I went to Mayo Clinic. Can someone tell me what the test measures and how it's done?

Thanks!

Gena

[LindaJoy]

Okay, I now have my diagnosis, but I'm not quite sure how they relate. Can anyone help me? I know everything I'm about to say has been talked about here, but right now it's all I can do to hold my head up to type, my neck hurts so bad, so I'm not going to be able to be on here long to research. Thus, I'd appreciate any responses, even if you're repeating. Thank you. Linda

I have:

POTS with Vasovagul (? spelling) response

Venous blood pooling (30%, which I was told by Dr. Fouad is extreme)

Rapid circulation (What would cause this?)

And, maybe, low blood volume. I didn't hear this, but my husband said he thinks this is something that Dr. Fouad mentioned, as well.

What could be causing all of this? Are the rapid circulation and blood pooling somehow related? Does rapid circulation have anything to do with hyperadrenergic?

Oh, my doctor said my autonomic tests came out OKAY! No problems. Also, my pituitary tumor is GONE! After ten years, it's been absorbed by the flesh of my pituitary.

Now, I'm left with the above and don't know how any of it works. Any help / explanations would be greatly appreciated.

Thanks! LindaJOy

[Ernie]

Hi Linda,

I'll give my best shot:

POTS with Vasovagul : Your HR increases 30bpm or more when you stand for 10 minutes or less. You also have syncope or a possibility of it.

Venous blood pooling: Your blood vessels in your extremeties dilate too much when you are upright and more blood than normal stays there and not enough goes to the brain.

Rapid circulation (What would cause this?) Fast heart rate to compensating for blood pooling.

And, maybe, low blood volume. Not enough blood in your body. Many with POTS have this problem.

What could be causing all of this? That's the one hundred million dollar question.

Does rapid circulation have anything to do with hyperadrenergic? Probably in your case.

Oh, my doctor said my autonomic tests came out OKAY! No problems. What does that mean OK with all the rest positive?

Ernie

[LindaJoy]

Thanks, Ernie. Your explanations really make sense to me.

Linda

[Jersey Girl]

I believe that when they say your autonomic reactions are "ok" they are implying that you don't have autonomic failure--but I stand to be corrected. Martha