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612876 tn?1355514495

Hoping to Perk Up for my 31st

Hey All,

Popping my head in for a quick update.  I'm sure you all, and only you all—because no one who doesn't actually have this bugger of a disorder could possibly understand the enigmatic ways in which it unfolds itself in our daily lives, LOL!!!—will understand that somehow I'm suffering horribly from what I *think* amounts to little more than heat intolerance.  No, no, no, that's not the enigmatic part.  The enigmatic part is that my heat intolerance seems to be *despite* the fact that I'm spending 98% of the time holed up in a tiny room of my house with my air conditioner set on 72 degrees F.  The A/C is waaaayyyy overpowered for the size of this room—designed for up to 300 sq. feet in a 150 sq. foot room*—and it feels almost snowy in here.  Even on days when outside temperatures fell back to springlike levels and both the outdoors and house were plenty cool, my body would positively freak if I turned off the A/C or exited this room, even though a mere month ago I could've tolerated 74 or 75 degrees pretty well.  What gives, oh freaky dysauto body???!  I did seem to have some sort of virus immediately following Memorial Day, and have had on and off symptoms that *could* be viral ever since, but those GI symptoms could just as easily be dysauto stuff too so ???????

Either way, I'm having the sort of days where I take five steps down the hall out of my air conditioned cave of safety to open my mouth and say something to MrMcDreamy, only to get out half a sentence before dropping like a lead weight right in front of him with no warning.  I ***HATE*** sudden faints like that which come on with so little prodrome that I don't get a chance to stop it from happening.  Ugh!!  It's also been too much for the Zofran to keep in check, so that's been ... not cute.  

So that's pretty much what I've been up to and why I have barely made headway at all on my goal of getting caught up on my backlog here.  :-/  It's my birthday week now, and my new goal is just to muster up enough "not sick" by THE day to actually follow through with my plans to enjoy myself.  You only turn 29 for the 3rd time once!  ;-)  

If anyone has a clue as to why I seem to be heat intolerant now even on relatively cool days, other than the obvious explanation that dysautonomia means my autonomic nervous system has refused to obey all of the laws of our physical universe in favor of its own idiosyncrasies, is welcome to chime in here with possible explanations.  MrMcDreamy thinks I need to go tank up on IVs, which is likely true, but unfortunately the emergency department won't take me until I'm half dead and my BP isn't there yet so I'll have to take it up with my cardio if I want that.  

Thinking of you all and hoping you're hanging in there!!  Thanks to everyone who has kept me updated on their lives via PMs—I do read them right away even if my responses are S-L-O-W!!
-Heiferly.
9 Responses
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Avatar universal
Happy Birthday! I so wish I could provide a magic salve :(

One random idea - to stay cool, i have resorted (in addition to AC, cold drinks etc.) to putting a blue gel ice pack in a knee high stocking and placing it in the freezer. When it's nice and cold I strap it to my forehead. The stocking provides a "tie" but is thin enough to not take away any of the cooling factor.....

I also sleep with something called a "chillow" (yes, i kid you not - there is a product by that name) - it's a pillow that stays cold when you lie on it. If anyone is interested i can give you more info....i use one for my feet, too (i have bad neuropathy, too).......

Helpful - 0
Avatar universal
  Hey, do you think maybe your body is overreacting to the air conditioning, warming you up because it "thinks" you're getting too cold? Maybe if you turn the AC down, your body thermostat will down-regulate a bit, so you won't feel as hot?
I don't know what I'm talking about, i just thought I'd throw this out, as another one of those frustrating maybes.

I have found that if I keep misting myself with a spray bottle, I feel warmer when I stop (unless I am outside, in a breeze).
Helpful - 0
Avatar universal
Sorry things are so rough for you right now.  I hope you have a nice birthday and are feeling better soon.  IV's sound like a good idea.  Do you have an urgent care center that will do IV's?  I got my last one there.  Also, have you thought about calling your dr. at Cleveland for additional ideas?  

Hang in there!

:)
Laura
Helpful - 0
1323747 tn?1364806882
First of all Happy Birthday!!  I too hope that you have a good celebration.  Maybe ice cream cake would be appropriate this year?  ;)

If you have access to a yard I am wondering about two possibilities.  One is one of those water spritzer things that mist you in addition to submerging in a pool of any kind including a kids pool.  We can have really hot days in summer here.  We have a smallish above ground pool we put in and on hot days I go in and submerge and I don't towel off when I come out.  I am able to stay out as long as I am wet.  Otherwise I have to be in the A/C.At least it would give you some reprieve from the one room you are keeping icey.

This morning I was borderline hypothermia.  These bodies of ours....sigh  Marie
Helpful - 0
Avatar universal
AMO
heiferly,

i amhoping your week gets better for you! crummmy to ffeel so punk, but on a time you want to have fun, it stinks.
i do not have any wisdom , to share on what will do that to you:(

bu t  happy happy birthday:))
amo
Helpful - 0
Avatar universal
Happy Birthday and hope it is a good one.  Maybe it will be the start of a good year!  

May this be your year,
Christy
Helpful - 0
Avatar universal
Hope you have a HAPPY BIRTHDAY hunny *****

Fingers crossed that you start to feel better soon x

I do hope that we are all invited to your ICY party........promise we wont complain!!!!

p.s.   I am still  *27* - this year was my 5th year reaching this fab age!!!

xx

Helpful - 0
Avatar universal
HAPPY BIRTHDAY!

Heat intolerant? Well, I guess autonomic dysfunction involves hypothalamic dysfunction causing thermo-dysregulation? Okay, that just popped out as my first thought. LOL It may be true, but it doesn't help. What can you do for a broken hypothalamus?
Cool fluids will help.
And don't eat foods that warm you up, such as corn.

AND HAVE A HAPPY BIRTHDAY!
Helpful - 0
Avatar universal
Well, I (obviously, based on everything else I've written on here) have no words of wisdom for you,
but I do want to wish you a happy and healthy birthday. With no floor-hitting. :)
Helpful - 0
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