My BP ranges from 110/59-137/85

Are you using an SSRI antidepressant? How about other RX and OTC medications?

nope, just asthma steroids and zantac for acid when needed.

These are actually pretty good numbers. What about HR? How does it relate in these episodes (the numbers)?

You say your POTS is complicated...did you have a tilt table? If so, what were the findings?


Have they considered anything else for the light-headedness? How's your blood glucose? Have you had a 3 hr GTT?

HR will go from say 70 to 100 upon standing, sometimes high especially if hot or eaten.

Blood glucose is perfect yes I had that test.

Those numbers aren't too bad either.

How were you diagnosed with autonomic neuropathy? Do you have other autonomic problems (urination, GI motility, sweating, etc.)? Have you had the tilt table, holter monitor, 24 hour ambulatory BP, QSART, or any other tests in the autonomic battery?

What about autoimmune testing (other then ANA)?

POTS seems to be diagnosed a lot now. My daughter had these same symptoms. It was explained to her that the normal response to standing (decreased B/P, increased H/R) was not working for her. When she stood up her B/P went down and her H/R went up but it didn't stop going up as it should normally.

She had a tilt test and fainted before the meds could be administered. They let her H/R keep going until she passed out at 225. I was allowed to stay with her because I am a nurse. That was so hard for me to watch. I was telling them to stop before the 225. They wanted to see at what point she passed out.

She was a teenager at the time. She did started to take Florinef and it worked. It increases the blood volume thereby helping the B/P to not drop as low. This prevents the H/R from racing and not stopping.

It is essential that you have a good fluid intake. Drink a lot of water and use foods with salt. She carried a water bottle and ate pretzels whenever she felt faint.

It went away about two years later. Every once in a while she feels light headed and realizes she is probably a little dehydrated.

If they are suggesting the Florinef I personally would give it a try. It might work.

Dear Andy,
I have EDS Vascular/Classical with MCTD (Raynaud's, Sjorgrens, high ANAs). I have peripheral neuropathy that started about 8 months ago. My PC said it is because of the autoimmune problems. He basically said that it is what it is.
I also have tachy and have had it for about 7 years. I am on beta blockers for it (and the subsequent hbp) and as long as I don't carry things, bend down, etc, I am fine (LOL).

It is important to keep pushing the water and salt. Your body will eventually slow down on the bathroom breaks when it gets used to the added water.
Karen

I have only had the ANA, Lupus, thyroid/thyroud antibody autoimmune blood tests, inflammation markers and Lyme all negative.

My sweating is decreased in my opinion. I dont really have symptoms of an autoimmune disease, I do have signs of Ehlers danlos type 3 I guess, but I dont see how people randomly get dysautonomia from it, only some sort of nerve damage. I am not diagnosed with neuropathy although I dont see how one can have dysautonomia without it...

Because my bp stays normal, I guess theres only damage to certain parts?

Tilt table showed a quick drop and recovery in BP not a huge drop either, valsalva was perfect, and sinus arythmia, hyperventilation etc, pupil dilation is perfect. So it seems my autonomic system is working, just seems the signals probably dont get to a certain area.

Now if I stand up and my hr goes up, if I bend over with legs straight it slows down, so the splanchnic area is my suspicion.

Sometimes I stand and my HR wont go up much but ill still feel crap, or not as crap, I dont get how it can work then not work kind of.

I'm scared of it getting worse and want to prevent any life threatening nerve damage etc. Is there any test in your opinion to get to check for autoimmune problems?

Looks like you had some of the basics in regards to autoimmune testing. The following is a general list of most common autoimmune panel. Of course CRP & ESR are usually tested for inflammation.

http://labtestsonline.org/understand...bodies/start/2

If you are not having common AI disease symptoms like fatigue, joint pain, dry mouth/eyes (for Sjogren's), facial rash (Lupus), then your BP problems and feeling like crap may be from something else. Your BP is not consistent with autonomic dysfunction (because it corrects itself very quickly)...yet your seem to feel bad longer then your BP stays low. This is confusing. Can you duplicate your symptoms and make them happen (based upon position)?

I wonder if it would be worth getting an evaluation with an endocrinologist. There are hormones related to fluid/salt retention and usage that may be out of whack...like aldosterone. Have you considered this?

Here's a link to wiki for this and how it effects BP:

http://en.wikipedia.org/wiki/Aldosterone

Not sure if any of this is helpful...but may be worth looking into other AI disease labs and endo consult.