Delta

Hi, and thank you for responding!  No official dx yet other than it looks as if ANS is messed up.  Endo & other docs ruled out pheo, thyroid, adrenal stuff, potassium deficiency.  Had neuro tests where they hooked me up to a BP cuff and had me do all this breathing stuff and stand up for five minutes, but they didn't tell me anything (yet).  They wanted me to do an EEG with lights but I am not comfortable with that because I looked up this test and apparently some people get really traumatized by the strobe lights; have you heard of this?  I don't want my ANS to get any more stimulated than it already is!  Cardio gave me Metoprolol a few days ago because I was concerned about the heart rate (he isn't) - I finally took literally a crumb of it yesterday when HR went over 100 and was taking a while to come down (after shopping and putting away groceries - everyday stuff, right?) and it knocked me out.  It's tricky about how to take it because some days HR is just fine.  Also, I researched the Met. and discovered it's "selective", meaning it's designed to affect that heart more than other parts of the ANS . . . I'm thinking maybe I need a "non-selective" type since my sx are not just cardiac.  I've read a lot on here about low blood volume and compression hose - how did the docs dx that?  I have no idea if I have it.  I have definitely upped my fluids, though, and I have never been much of a water drinker.  When you say it's hard to get out of bed - is that because of fatigue, pain, or what?  Apologies for all of the questions; I am trying to figure out what goes on with this type of stuff.  Like, what exactly happens in a relapse?  Feel free to PM!

Hello, all!

I am new here, although I have been lurking for a few weeks now.  I wanted to start with a longer post by way of introduction but, honestly, just now I don't know where to begin - this dysautonomia stuff is all over the board.  I'm three months in and still trying to figure things out; many dr. visits and tests.  So I will start with a question . . . is there anyone here who is home alone for hours, and how do you deal?  I am retired; my husband has a couple more years to go.  He has a 12-hour day if you count the commute (same thing I had when I was working).  We're kind of "removed" where we live - more rural - we have neighbors, but they're not that close by and they all work.  Some days I don't feel OK to drive and if I do it will mostly be for short errands because I will get wiped out doing the things/places I used to do that involved more standing and walking (from what my Rite Aid cuff and pulse ox tell me, my BP and HR often go up higher than normal when I stand, walk or generally exert myself; then I just feel really fuzzy-headed until I sit down for a while and it eventually comes back down.  I never know how "bad" it's going to be . . . a few weeks ago I went shopping with my Mom and I started to feel weird so checked my BP and it was high (not super) and after a while it came down on its own).  It's kind of scary being alone (OK; not totally alone; we have dogs) for so many hours with all these weird things going on - I try not to, but I get anxious about it sometimes and it seems that there's often a "baseline anxiety" that comes with this so I'm only making it worse.  Our families live in other states . . . my Mom has come down a few times for a week at a time and my husband has taken time off from work to stay home with me or drive me to appts. but I can't keep asking them to do this.  I would be grateful for any advice/thoughts/ideas and feel free to ask me any questions as well!