My Nurses Story

[lieze]

I found it amazing that my nurse was not only knowledgeable about POTS but had personal experience with her husband having it. She says he's been dealing with it for 7 years and is doing much better than he was.

She said it took two years to get a diagnosis that he was passing out and one day he passed out and fell down their steps and she said she was so frustrated she loaded him in her car and drove him to Toledo.

She said by the time they got there he was lethargic and it took 6 men to get him out of the car. She mentioned the name of the hospital they went to but also that Dr Grubb came over to see him.

She said the first thing they put him on was Lexapro and that helped the most. She said it isn't that we don't have enough serotonin we just use it up. She said the body also isn't meant to be in fight or flight 24/7-so it helps with that.

She said her husband was going through all types of affects to his body. That his hands would swell up and he would go into a type of anaphylactic response and that it was just a part of his POTS. He was also incontinent of urine and bowel and she said this was just his brain sending the wrong messages at the wrong time and that he went through all types of testing for that but that it resolved on it's own. She said whenever he gets sick it messes him all up and also whenever the barometric pressure rises. She says they keep a barometer in their home so they know when he is going to have a bad day.

With his POTS he was just passing out without warning. He also has cluster headaches, during her admission process she would just say yep that sounds just like my husband.

I'm sure I"m not remembering everything she said. I tried to listen to everything she was telling me.

She did say there is usually a 3 hour wait in Dr. Grubb's office but that he doesn't require testing like tilt table.

That if he knows you've had a virus and are symptomatic he starts the meds if they are effective then you earn the POTS diagnosis.

So I guess that's what I do next is try to get in there. Wish me luck.

It was reassuring to me that my nurse was as knowledgeable as she was. She instinctively held my metoprolol and yeah that's a nursing function to hold bp meds especially with something like that you'll have a parameter like hold the med if the systolic bp is less than 100 or pulse less than 60. So I'm glad that she was cautious with me.

Oh too my ER doctor said my serum norepinephrine of 800 isn't too bad.

He said he had a family practice and had 3 people with pheochromocytoma pop up in one season and the catecholamine levels he was seeing were 4500. So he said yeah mine was elevated but not to worry too much about it.

Makes me wonder if some of this stuff is environmental. Yikes!

That's all I can think of for now.

If I can think of anything else I"ll share I just find this info fascinating myself even though probably for a lot of you it's just review.

[MightyMouse]

Above 600 is considered elevated for norepinephrine. In all likelihood, your body is pumping out the stuff to try to counteract the lowering blood pressure but speeding up your heart rate--it's the body making sure your major organs keep their blood supply, including your brain. See the following article from Mayo Clinic

http://www.mayoclinicproceedings.com/content/82/3/308.full

Also, you should know that there is often a wait of several months for an appointment with Dr. Grubb.

[issie]

Above 600 is considered elevated for norepinephrine. In all likelihood, your body is pumping out the stuff to try to counteract the lowering blood pressure but speeding up your heart rate--it's the body making sure your major organs keep their blood supply, including your brain. See the following article from Mayo Clinic

http://www.mayoclinicproceedings.com/content/82/3/308.full

Also, you should know that there is often a wait of several months for an appointment with Dr. Grubb.

I found this article very interesting. Thanks for including it.