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Hello,

I have just returned from my outpatient visit at Vanderbilt. I have to say just about every person I encountered there was pleasant. It was a very positive experience.

The testing was absolutely horrible. I would not like to have to do it again. I was almost in tears after the third test, and couldn't even sit up after the fourth. I wonder how long it will take me to get back to baseline... I get to start my meds again tomorrow.

The doctor confirmed I do have POTS. Which we knew, but it's nice to have the testing now to validate it for my disability. (I am only able to work part time for over a year now).

The interesting this is, the doctor put in my report that I had an "Exaggerated sympathetic vasoconstrictor response". He also refers to me as having "hyperadrenergenic responses". When speaking to me in person, he simply said my autonomic nervous system was in overdrive. He also said my autonomic reflexes were intact, and that that is a very good thing.

My EP cardio here tested me for hyperadrenergenic POTS and said I didn't have that...

Anyway, the good news is, the doctor told me that I will recover from this. :) I have slowlybeen getting better. A year ago I couldn't hardly get out of bed, and now I am walking a few times a week. I still have bad days, and I still can't work full days as of yet, but things do seem to be getting better! :)

So that's my news!

:) Angela

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WOW! that is good news.

ESPECIALLY since you have been showing progress.

Many of us have the hyper adrenergic stuff and realize, we always have it thus SOMETHING sets it off and we get worse. After 18 years I believe this but the first 8 years I had this I was told it was CFS !!! Also realized I had this as a little kid and always had horrible physical tolerance.

But since yours came on suddenly *you are the 80 per cent group and that has better chance for recovery! YAY. Glad your vanderbilt experience was good and much more productive than the last doctor visit.

I look forward to seeing your recovery and getting back into your dancing!! The fact your exercise tolerance is improving so quickly is a HUGE sign too. A great positive sign.

:):)

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WOW! that is good news.

ESPECIALLY since you have been showing progress.

Many of us have the hyper adrenergic stuff and realize, we always have it thus SOMETHING sets it off and we get worse. After 18 years I believe this but the first 8 years I had this I was told it was CFS !!! Also realized I had this as a little kid and always had horrible physical tolerance.

But since yours came on suddenly *you are the 80 per cent group and that has better chance for recovery! YAY. Glad your vanderbilt experience was good and much more productive than the last doctor visit.

I look forward to seeing your recovery and getting back into your dancing!! The fact your exercise tolerance is improving so quickly is a HUGE sign too. A great positive sign.

:):)

I'm sorry what is this 80% group that has a better chance for recovery?

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Thanks Sophia,

I'm not sure if anyone remembers, but my POTS is believed to be post-viral. I had viral meningitis in 2002, and while I seemed to make a full recovery from it, I started with POTS about six months later. And, my symptoms waxed and waned, so I was diagnosed with anxiety disorder for almost 5 years until I ended up in the hospital for several days. So I haven't had this my whole life like a lot of you.

You have all been so supportive of me when I was at my worst, and needed so much for someone to understand. You have all helped me find answers, or at least directed me to places I could find answers. I know I wouldn't be where I am today if it weren't for you. And, of course, help from above.

Thank you, thank you, thank you everyone! I appreciate you all so much. You have no idea.

I am by no means cured, and I still have bad days, so you aren't getting rid of me so easily. I'll still be around :)

Angela

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Hi!

Sounds like it was a productive trip, and WOW! what great news! I am glad that it seemed to go well, I only wish the testing wasn't so bad! :)

Hope things continue to get better! :blink:

Jbrian,

Someone can help me out or correct me if I am wrong, but the 80% group that has a better chance of recovery is the group of people with POTS/NCS?

that developed it after a viral infection, surgery, pregnancy, etc. without any other co-syndromes/conditions causing the dysautonomia. So, the other 20% is those born with it or other conditions that then develop into POTS etc. So, if you fall into the 80% group there is a higher chance of recovery. This is discussed in journal articles post-research, I am not sure which, maybe someone else knows...

Hope that helps!

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I had the BP and heart rate taken while lying, sitting and standing.

I had to breathe in and out on command.

I had to breathe into a tube that was connected to a blood pressure thingy, and had to keep the mercury at 40 for 15 secs. My HR went crazy! And my heart felt like it was beating wrong for a bit afterward. That is what got my HR to 155 and made me so miserable.

Then they put my hand in ICE water, and I mean mostly ice a little water and I had to keep it in there for a minute. That really hurt! On paper, that seemed to me to be the least problematic besides the BP and HR stuff, but it really hurt!

Those are the tests I had.

Angela

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Angelica,

I'm so glad to hear your trip to Vandy was good, and that you were treated with respect there. It's also good to hear a full recovery is possible. I know you have been going through a rough time, and this has to give you a little hope for some sunshine in all of this.

My POTs seemed sudden too, but I rememeber episodes with my heart, panic attacks, and trouble running as a child, but it seemed so mild compared to my crash in 2000. I'm one of those who probably has POTS secondary to the EDS, and cervical/cranial instability. I wish is was post viral.

I hope you get back to your baseline soon. :)

Maxine :0)

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EDS is Ehlers Danlos Syndrome.

I have the classical type. It's a genetic connective tissue disease affecting the collagen.

See: http://www.ednf.org/

I have to go out the door to an appointment right now, so I posted the link to explain it to you.

My EDS has affected my spine, joints/ligaments, bowels, and I also have vascular involvement.

I'm going to an oral surgery appt. right now. I have dental issues also from it.

Maxine :0)

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Hello, I am glad you did ok. Do you ever have any nausea? I am nauseated all the time. This has been going on for 2 years as I was recently diagnosed with POTS at Mayo Clinic. Can you tell me all of your symptons and the meds prescribed. Thanks Buffy

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Hope you bounce back in a couple days from the testing, Angelika.

The testing takes a LOT out of people and YOU drove home the same day. That's a lot of stimulation to the ANS and your body. Rest up and STAY COOL.

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Guest tearose

It is so great to hear you had a worthwhile journey and lots of helpful information.

I hope better days will come from this effort.

best regards,

tearose

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