britishangel6 Posted March 2, 2013 Report Share Posted March 2, 2013 My Pots often makes me feel cold disproportionate to the temperature. When it's really acting up the only way to get warm is hot water. Lately I am having these episodes daily, every time I wake up and usually once more later in the day. I wanted to know if anyone has tricks to staying comfortable?I don't keep the house hot because I know it makes it worse (and my husband runs hot) but lately I've been in at least 3 layers, often under a sheet, electric blanket, and comforter and half the time a hat. The thermostat is 72! I used to lay on a heat pack and it worked great when I would go to bed but I'm pregnant now so that isn't an answer and I'd like to tolerate getting out of bed a bit more on my otherwise 'good' days. Quote Link to comment Share on other sites More sharing options...
corina Posted March 2, 2013 Report Share Posted March 2, 2013 My situation was a little different than yours as I was cold all the time. Taking a hot bath every day and then dress up in pajama's and night gown I got in my pre heated bed (electric blanket) to stay warm for a few hours. As soon as I started mestinon I could keep my temp up. Really amazing and very happy to experience that! Now that I'm on octreotide I don't need the mestinon anymore but I remember that to me it was the best helping med of my combo at that time! Quote Link to comment Share on other sites More sharing options...
SnowDrifter Posted March 2, 2013 Report Share Posted March 2, 2013 Weird how heat makes some people worse. Getting warm makes me feel a bit better. Probably because I always run a temperature of 99.8 since this all started Quote Link to comment Share on other sites More sharing options...
Joann Posted March 2, 2013 Report Share Posted March 2, 2013 Layers help. I am one of those that can't stand being cold. I actually like the warm weather, unlike so many here. If I even drink a cold drink, I am sometimes freezing.So when I am cold, I will often heat up some water in microwave and drink that, I start to feel warmer. I also have throw blankets, on chairs, couches, etc..I always have flannel shirts or hoodies on over my clothes, even in the summer. Double socks, and slippers in the house.Also you can get those little hot packs that you microwave, they are filled with rice or beans. Cuddling with someone can help too!. Quote Link to comment Share on other sites More sharing options...
SnowDrifter Posted March 2, 2013 Report Share Posted March 2, 2013 Also you can get those little hot packs that you microwave, they are filled with rice or beans. Cuddling with someone can help too!. They are rice. You can make some yourself to - they work great Quote Link to comment Share on other sites More sharing options...
ukwildcat Posted March 3, 2013 Report Share Posted March 3, 2013 Some of you were talking about drinking something warm. Many times when I drink something hot like tea, hot chocolate, or even soup it many times triggers my pots symptoms. At first I thought it was caffeine but even happens with soup. Anyone else ever have this problem. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 4, 2013 Report Share Posted March 4, 2013 Warm bath or shower. Running hands under warm water for a few minuted if a whole bath/shower isn't practical. Drinking warm fluids (tea, decaf coffee, warm water with lemon and honey, broth, tomato soup). I have a particular problem having any draft around my neck or head so scarves/pashminas that I can wrap around my head and neck to keep the draft off make a huge impact on me (incidentally, this is the same area I have to cool when I swing to a hot flash)....go figure.And, finally, I have a big chocolate Lab that I will call up on the bed and spoon with to get her body heat. She gets a belly rub, so she considers it a fair trade. :-) Quote Link to comment Share on other sites More sharing options...
Batik Posted March 4, 2013 Report Share Posted March 4, 2013 I'm very fond of an electric heated throw I have. It's the sort you can wrap around yourself rather than the sort which goes under a sheet, and I think it gets warmer than those ones. Sometimes it helps to leave certain parts of my body out so that I don't get dizzy etc., and to stay well hydrated. Quote Link to comment Share on other sites More sharing options...
ashleighheath Posted March 7, 2013 Report Share Posted March 7, 2013 yes, layers, layers, layers. i have to have some kind of daily camisole, tank, etc. on almost every day, even in the summer. often then a 3/4 sleeve shirt or think long sleeve shirt, or sweater.in winter, and summer, i'm a fan of "poncho" sweaters as a general over layer. they keep you warm, but air circulating. plus you can take them off quickly.... (in the summer, they make gauzy, types.)another great winter layer is a pullover fleece or sweater with a zip in front (the longer the better). this is like a really quick thermostat control. a longer zip gives you more temp control and also helps w/ ease of removal.finally: the best secret weapon for temp control is: SCARVES! (again, even in summer....just diff. fabrics.) in the winter, esp. depending where you live, it might be a 1-3 scarf day. (i.e. "the inside scarf", plus 1-2 outside scarfs for the outside temps.) the trick is to get warm and stay warm, but not overheat. (you can use scarves to "uncool", too, when you get too hot. just take it off, or unlayer and instant cool down! great trick in winter, or summer.) yes, keep those hands and feet warm, too. yummy socks. (at nighttime i like larger socks both for comfort but also so that i can easily take off if i get too hot.) and be sure to keep the hands warm, too. (same with the head.)we dysautonomics lose our body heat much faster than the average citizen, so it's important that you layer up right before you leave with the scarf, hat, glove, etc. and wind layer. (and like katybug says, a lab is a great warming and general feel-better companion!) - also agree with warm baths. i could literally write a book on that. ironically, in the winter b/c i live in a humid climate, my net energy is really maxed by a bath, so i have to budget one for about every day and a half or so. - a warm "corn bag" is nice. but the up and down of warming it up is often not worth it. - i love my ceramic "travel" mug. it keeps tea warm for quite awhile and feels great on the hands. i generally have a couple of yerba mates a day. generally when i start them i'm craving a warm up. often by the time i finish, they are just more hydration.....http://www.bedbathandbeyond.com/product.asp?sku=18668157&utm_source=google&utm_medium=cpc&gclid=CJTl9Z7U6bUCFQY4nAodymEADg- finally, i sleep with my north face sleeping bag under our bed clothes. so that both my husband and i can sleep equally comfortable. i don't zip it up, but i'm nestled in it and am able to get quickly warm every night and we both sleep great. (before i discovered all the layer tricks i drug it downstairs so i could use it during the day/evening, too.)stay warm and stay cool! Quote Link to comment Share on other sites More sharing options...
ashleighheath Posted March 7, 2013 Report Share Posted March 7, 2013 oh yes, ukwildcat, eating/drinking warm -- and cold -- things can definitely bring on my symptoms (warm baths, too.) generally i prefer my food and drink room temp. and when warm, only mildly warm. Quote Link to comment Share on other sites More sharing options...
ashleighheath Posted March 7, 2013 Report Share Posted March 7, 2013 just thought of a couple more things.> warming "accessories." necklaces, watches and bracelets can help keep you warm (and, thus, overheat you in the summer.)however, this can be used to our advantage in the cold months.consider repurposing some of your jewelry you might not otherwise feel like or make an effort to wear. - maybe take granddad's watch and have it resized. or wear yours again. (like all of these pieces, it will initially feel cold, but your body heat will warm it and hold the heat.) (a metal watch with crystal movement is preferred.)- the larger the diameter the better, for heating purposes. stones or beads are best vs. metal. also chokers will keep you the warmest, generally. consider making a trip to the neighborhood bead store and finding a string of stones that feel good to you and making a choker with a "T" and circle clasp....really easy to remove. (and usually you'll get lots of assistance if you have no beading experience.) rose quartz is esp. warming and apparently has wonderful healing properties. most importantly just find something that feels good and feels warm. - wide bracelets are also great. i love ones with elastic that fit a little tight, with a little wiggle room to adjust above the wrist. (compression!) i've had good luck w/ ones made of shell, large "seeds" etc.> fingerless long-armed gloves are great. (i have something similar that my ortho made for me.) i've seen something similar @ a local shop for $15.:http://www.zappos.com/ugg-bococa-fingerless-glove-mahogany?ef_id=USfgSwAABLu1RzvU:20130307040932:s Quote Link to comment Share on other sites More sharing options...
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