Is This Hyperpots?

[Altruism]

Hi,

I had my laying/standing norepinephrine tested twice.

First time I rested for about 5 min only and was poked twice, so I was told the results are not reliable. My Laying down NE was 290 and my standing 7 min later - 997.

A week later I had it redone in a more controlled environment - rested (not in a dark room) for 40 min and had an IV. My resting NE was 157 and my standing NE 12 min later was 597. (couldn't do 15 min)

According to my doctors, this is not Hyper POTS, but I think it's borderline to the least. Plus, there are so different theories out there in terms of NE levels...

I don't have high BP when standing. It doesn't change a lot actually, but can drop a little sometimes.

We ruled out pheo and my MRI is clean. I don't have peripheral neuropathy (negaive QSART) and I don't have blood pooling. My blood work is fine. My MRI is clean, my CT scans are ok. Then what the heck could be causing my POTS?!

[bebe127]

Altruism,

Sorry I do not have any answers for you, however if you do get any, I might have to jump on your bandwagon

I haven't had many of the tests that you have, but my results (for the tests that I have had) are the same. My bp does rise a bit upon standing (TTT), but all my bloodwork comes back normal (or so says the dr. I really have to look more into this), treadmill stress test says heart is in tip top shape, EKG normal, don't have blood pooling, don't faint, CT normal, etc. I have the same question as you do...If everything is so NORMAL, why do I feel so ABNORMAL all the time???? As I'm sure you've read from me on here before that no dr. has ever told me why or how I got this (mine was pretty much instant onset) or if I'll ever be rid of it. I never even knew that there were types of POTS until I began my own research, and my dx. dr. was under the impression that only florinef is used to treat POTS! Such a quandry...

I do hope you get some answers and relief soon.

[badhbt]

I think that is the magic question for a lot of us. I don't think the medical community is clear yet either. I am sure your pregnancy kicked it into gear, but why? Why does EDS cause it? I think mine was induced by exercise, but that doesn't make much since either. If I only had a brain to figure it all out

You might be in the normal run of the mill POTS...if there is such a thing. I know in the beginning of my illness I was having horrible surges like you...I knew I had to be hyper POTS, but oddly the surges went away. I get a few here and there, but nothing like I use too.

[Kris4444]

I have the same question. I went to Mayo for ANS testing. Everything was normal with the exception of high NE and NM. Mine was 656/1199. The discharge summary for billing purposes says POTS but when I asked if I had POTS they said no. I did not ask about Hyper Pots though but the neuro says I have a "hyperadrenergic state" whether or not that is Hyper Pots I still don't know. I have major flushing issues, dizziness, hot/cold intolerance, exercise intolerance...the list goes on and on. Is it Pots? I still don't know.

I totally understand your frustration. Sometimes it just does the mind good to KNOW what to call this.