McBlonde

Sorry! How embarrassing! I used to be really smart when I had blood in my brain!

Well, that's surprising isn't it since you did so well with your salt & water regimen after you went to Mayo! Are you still taking Florinef? My Neuroendo told me that Florinef would not work unless you take salt with it. It's all so confusing and contradictory!! Glad your feeling better!

What's ALA? When I take Midodrine, it's like the elephant got off my chest and I can breath deep. I'm betting that it's the constriction that the Midodrine gives me.

That''s an interesting thought, Chaos!

So this tilt training works even if you are symptomatically within 2 minutes of standing?

Oh my gosh Issie! I can't take Valium or Ativan either! They do the opposite of what they are suppose to do.... be in pill or IV. I can take xanax. I am not familiar with serax? Isn't that another crazy thing! So glad you were able to figure out something for your procedure and glad it's over!!!

LOL, DizzyDe!!! @ IllHarmony.com!

Did the nephrologist check his renin and aldosterone?

Good for you on cutting her out I Hate Bananas! She's toxic and doesn't have a CLUE what she's talking about. The last thing you need is her dumping more stress on you! (((Big Group Hug)))

Day 6 of still waiting to hear back from my dysautonomia doctor. Edit to add.... There was a good reason and it was definitely worth the wait. He talked to me at length and answered all my questions!

So far (knock on wood) no stomach issues from G2.... I drank the 2 liters of water + salt tablets for years never getting my BP to normal. I was shocked that switching from water to G2 raised my chronically low BP ( not that it stopped my large drops in BP when I stand though )

Glad to hear that!!

Wendy.. Underarmour has a good tight pair that are made of a material that repeals sweat which is good. http://www.underarmour.com/shop/us/en/womens-ua-heatgear-tight/pid1201276-001

What's the name of it Lemons? I need to get that to alternate with my compression running pants. As soon as it gets cooler (If that ever happens here!) I am going to use the foot to waist Spanx. The compression running pants have helped a lot.

Thanks Lemons! I missed what you said earlier. I think I've probably changed like that and need a very very small dose of whatever one. Here's hoping I finally get a return call from the doc tomorrow so I'll know what his thinking is. Thanks!!

I've had the same experience as Lemons. A huff of Albuterol gives me the same result as a dental injection of Lidocaine with epi.

My sleep cycle was upside down for years, too. I would be able to go to sleep until 4 or 5 in the morning and then I would sleep until afternoon. All of a sudden in February, it corrected itself and I have no idea why! I go to sleep about 12:00 and get up about 9:00. Crazy! I am so sorry you are having this problem, too! Klonopin does help me do to sleep & a baby dose of Trazadone gives me a good deep sleep. I tried Ambien once... Laid in bed just waiting for it to hit.. 3 days later I was STILL awake!

I hope you have a great time on your trip! When I am faced with acquaintances that ask what's wrong, I usually just saying something like "I have a heart condition that affects my BP and HR." Even though POTS is not a "heart condition" .... people know the words "heart condition, blood pressure and heart rate" so that answer satisfies them. I have found in my experience that most people's eyes just glaze over if I really talk about dyautonomia to an acquaintance. When most people ask you how you are, they don't really want to know... Real friends & family that care are another story completely!

Thank you Jangle!

During this years long process of trying to figure out what was going on, I was dx'd by a university rheumatologist with fibro back in 2003 before the POTS dx. In many ways it seems like CFS, Fibro and POTS and have many similar symptoms.

Huh, Jangle! "POTS patients have naturally low levels of norepinephrine reuptake" ...... so even though I have high levels of nnorepinephrine, the reuptake is low? And I would have never imagined that it was the serotonin that was eliminating the adrenaline surges. I thought those were being eliminated by Effexor CONTROLING the amount of norepinephrine When my doctor calls me back I will try to get this straight. One thing though that confuses me is that he normally prescribes Cymbalta (another SNRI) for his POTS patients..... If your are correct about the serotonin, looks like they would be prescribing 5HTP instead of an antidepressant?

I don't know Katie.... Now I'm getting confused! I thought the dysautonomia doctor that I just went to said that my pre-syncope symptoms I had in his office was because my BP feel from 140/95 to 99/70 while standing and that my blood vessels in my brain weren't constricting when my pressure came by up so..... cerebral hypoperfusion. (but I may be 100% wrong)

Oh! That's me in McBlondeLand!! I never even thought of year around school!

Good grief! You are right. These doctors are beyond frustrating and wasting our time and money!! Yes, you will definitely get the pre-syncope issues when your BP drops so drastically like you describe or at least I do. That is a shame that your great doctor moved away. What state did he go to?

Wow! The kids are already in school in July?! They start early!