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Heat intolerance


metoo
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Hello,I have not had any test yet,I am going to Mayo next week.I do know if I stand for approx 10 mins my heart goes crazy,rapid heart and palpatations ,my neuro did a poor man's TTT of sorts,had me lay down first,then sit,then stand but did the BP immedately,no pulse at all.All together it took less than 2 mins.There was some change to my BP,it went from approx 120/80 laying,130/90 sitting and 150/100 standing.If I get hot my symptoms are so much worse and almost immedate.I take cold showers,keep my bedroom window open no matter how cold it is.My husband,bless him,is understanding about it all but I know he is tired of having to get out of bed at 5 am in a bedroom that is 40 degrees.I think heat intolerance is my major problem,more than standing up.It produces more symptoms faster.Most everyone talks about low BP,mine seems to go high.Is this still a dysautonomia?Also has anyone had the sweat test?They are planning on doing one on me next week and I am scared to death.I know I will get very sick when I get hot.If anyone has had one please tell me what to expect.Thanks,Melanie

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I have heat intolerance too, but not as bad as yours sounds. I still take warm showers, but I have to pay for it a little afterwards. I constantly have the ac in my car on, even in the winter. I freeze my husband half to death I'm sure, but if I dont I feel like I am going to be sick or pass out so it ac stays on. I have never had a sweat test and I am not sure exactally what it is. Let me know how it goes though. Maybe its something that I should look into. My bp goes up and down all day, but the drs at mayo should be able to tell you more about it. good luck! :)

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At the height of the illness, I was living with my mother, and I would keep the thermostat so low in the winter that the pipes were in danger of freezing. She sat wrapped in a blanket all the time. I took to spending time in an unheated garage--which, in winter in the Midwest, is colder than cold. But now I find that my response to temperature is more normal; when it's 35 or lower, I actually do feel cold now.

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My husband and I have "thermostat wars" in our house (he has NCS). I have adjusted after learning about this disorder by sleeping in long underwear and always having a fleece bathrobe available. In the summer, I walk around inside in the robe with my shorts & T-shirt underneath, ready to peel it off when I go outside, leaving the air conditioning for the real weather. The worst is riding in the car in the summer as I just can't bring myself to cover up with a blanket. He loves playing golf in hot humid weather as it keeps his muscles loose - then we go back to the deep-freeze when we return home - go figure! Warm temperatures inside or in an enclosed area affect him much more than the same or hotter temps in the wide-open outdoors.

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The sweat test is nothing at all like what you'd think ... and from your post, I can tell you're worried about being made to sweat because they raise the environmental temperature in the space you're in. Nothing could be farther from the truth. My cardiologists at Northwestern Mem Hosp in Chicago told me that the Mayo clinic is now the only center doing this kind of autonomic nervous system test in the country... (I was the LAST person they tried it on at Northwestern in early January... it's such a sensitive test and very prone to failure... they discontinued it!) I wonder, tho, if it isn't also being done at Vanderbilt, since Dr. Robertson is the leading POTS researcher...

I digress. Here's a description of my sweat test: they tightly wrapped a strap around 4 areas on the left side of my body: left wrist, left calf below knee, left ankle, left foot. Those spots get hooked up to monitors/computers and when everything is good to go, they run a teeny electrical current to those spots. It doesn't hurt at all, and it isn't particularly unpleasant even. (The tightly wrapped straps are the most uncomfortable part, I suppose.) Setting up the test takes longer than the test itself. Please don't worry about it; you get to lie down and if you want, you can (should?) practice your breathing and visualization while the test administrators set about their work. At mayo you'll probably undergo a bunch of other seemingly goofy tests, including some measured deep breathing tests. Nothing's physically painful, tho some things can be uncomfortable. (For example, some find the tilt table more difficult to manage than others--but remember that it's over fairly quickly!)

FYI blood pressure changes from sitting to lying and vise versa are not diagnostic of POTS. For some with pots, bp stays the same; for some it goes up and for some it goes down.

Good luck,

m

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The heat sensitivity is something that I think is getting worse? This among other things is on my list for the doc on Friday. I am having to keep the AC on all the time and am freezing my roommate and office mates. They come in the office in turtle necks, but all I can say is sorry but I have to get cooler or go home? I have been sensitive for a while but it has gotten really bad, hot flashes at night and when I can go walking don't feel that I'm sweating like I should, but that could also be a side-effect I've found. Good luck with your test and do let us know what they say and any suggestions they offer!

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My Sweat test was slightly different, than what Merill describes. I did go into more detail on an earlier post, but here is a snap shot.

I was asked to strip down to my knickers, (I wore bikini bottoms to feel like I was having some weird beauty treatment)

I was in a room that started at 30.0c - they lay you on a bed, which has blankets underneath and foil, and you are laid on top of some blotting paper, they then wrap you up like the baby Jesus with just your head sticking out. (my problem is the opposite to you, I don't seem to sweat and get very cold or very hot, yet at night time i find myself swimmming) they then left me, popping in every 10 minutes to check if I was sweating. Once I showed signs of sweating, they un-wrapped me, and dusted me in baby pink powder, which turned blood red where I had perspired. After that, a quick drawing, blankets scooped up around you like a nappy, and then a quick dash into the shower. (for me this was in the room across the hall - very embarrassing, but I can see the funny side :) looking back anyway )

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I have heat issues in the summer and cold issues in the winter. I also play thermostat war with my husband. I try to remember that the other four members of my household are not as cold as me. I bundle up in layers. When it's really bad I take a steaming hot bath and that seems to help.

As for the summer, my husband used to think it was all in my head. We moved into a house with air conditioning two years ago. Before that, no air, and I went nuts every summer. Three of those summers I was pregnant. I remember being 8 mos. pregnant lugging a 100 pound air conditioning unit inside (by myself) just to cool our bedroom. I remember crying and begging the OB/GYN to please take the baby out. I was so hot that I could not move and I had prickly heat all over. I would step out of a cool shower and start sweating. I had trouble brushing my hair and putting clothes on. I simply could not move. This was like this on off summers when I was not pregnant as well.

I have had air for two summers now and it has made a huge difference in my life. My husband and I are on different shifts so he turns off the air when I go to work and I turn it on when I come home. While perusing a web site on POTS about 3 years ago I noticed a statement on POTS patients and heat...and how we NEED an air conditioner. I thought this was so interesting and I was so relieved to learn it was not in my head. Good luck.

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This is really sad. My children are on spring break this week. I went in my sons room this morning, he had his blankets rigged up around the heat duct in his room. When he got up I asked him what was up with that. He said he was so cold last night he figured if all the heat went under his blankets (had it fixed like a tent) he would be warm. Well it worked but I was so upset. Our therm. is on 65-68 any higher and I can't stand it. I have been reading alot about the cooling vest I may just have to get one and wear it all the time. Thats pretty bad your child can't sleep in his bed cause he's too cold. My daughter is always running around with extra clothes on too. She sleeps with double pajamas. I think I have made my family suffer enuf.

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