Tilt Table test today!!!

[zygy2]

I posted not long ago about my situation and today I went for my tilt table test.  They tilted the table and my heart rate did its normal thing and went way up (as expected).  My cardiologist did comment about my blood pressure that increased instead of going low but did not spend much time on that fact.  I was given fludrocort and told to drink gatoraid.  What I am confused about is the increase in blood pressure.  I tried to ask him about hyper-pots and he pretty much told me there is no such thing and stop reading on the internet.  There were no other tests run and he wants me to see a NL but I am just confused.  The cardiologist seems to think that I need to be seen by a NL??? Is this my next step? ... and does hyper pots really exist? :)  What a process!

[zygy2]

NL- Neurologist :) NS-Neurosurgeon  I guess I am used to posting on the Chiari board where these are used constantly!    Thanks for all the great information.  I had headaches from the meds so I am off of them, I thought it was wrong.  You would not put someone on a med that will increase blood pressure when my problem is higher blood pressure when standing.  I was not typical with low pressure when in my tilt table test.  it also can increase CSF pressure so that just did not work for a chiari person.  I am happy to be back with my Neurosurgeon and he did a spinal tap last week, the pressure may be contributing to the heart rate so we are looking at maybe a lumbar shunt.  If I don't find answers with him than he will get me to the next tests.  He listens well to me so I am happy he is working with me some more.  I will just have to wait and see what happens next.  

[Heiferly]

The categories of PD-POTS and H-POTS are not standardized, no.  There are other methods of sub-categorizing POTS (see Julian Stewart, e.g.), and some renowned experts in the field don't really go with any of them.  Some autonomic experts aren't fond of the term POTS, actually—and I don't mean that in such a way that if a patient who has the signs/symptoms indicative of the diagnosis POTS under another doctor went to them that they would be told they don't have dysautonomia or are healthy, just that alternate diagnostic categories/labels are used and "POTS" is avoided entirely.  "A rose by any other name," right? [That's Shakespeare, for the non-literary-buffs out there.]

On the other hand, (oh how I can contradict myself), if you find over time that the treatments your doctor has you try (and it's probably best not to base this off just one, because this is often somewhat of a trial and error thing) are actually making things worse for you on the whole, that you get a sort of "gut" feeling that your doctor isn't "getting" it when it comes to your autonomic dysfunction, and that you might not have a good fit, there's nothing wrong with getting a second opinion.  Almost all of us end up changing doctors at some point.  Most more than once (particularly those that have multiple docs across specialties).  TTTs are notorious for being misinterpreted, unfortunately ... or maybe it's just that they are "open to interpretation" ... whatever the case, patients often find that when they take the original tracings to a second doctor, they get a different interpretation of the test than they got from the first doc.  It's worth considering if things don't seem to be "gelling" after a while.

There are other tests you should ask for.  You should ask to have something called a pheochromocytoma ruled out.  You should have 24 hour urine sodium, catecholamines, and histamine levels.  If you never had a holter monitor before the TTT, that should be done.  It's not a bad idea to get a baseline echo as well.  Serum electrolytes need tested now and at regular intervals, especially since you're taking the fludrocortisone.  Some docs/hospitals draw serum norepinephrine, but it's not mandatory; many of us have never had it tested.  Blood volume testing is a good idea to look for underlying hypovolemia.  There could be other tests that are recommended depending on your case in particular, but that's a good start.

Cheers,
Heiferly.

I'm sorry, I'm either not familiar with the initialism NL, or my brain is out to lunch at the moment.  What's an NL?