ramakentesh Posted March 1, 2012 Report Share Posted March 1, 2012 Most potsies are sensitive to heat, feel worse on hot days and feel increased dizziness. Ive always been a cold Potsie - feel worse in the cold, feel cold most of the time quite often.I wonder whether this differentiates anything? hyper v non hyper? hypovolimic v non hypovolumic? vasoconstriction v vasodilation? or just my ANS is broken? Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 1, 2012 Report Share Posted March 1, 2012 My ANS is broken I actually have trouble with both. When I'm hot I get very dizzy very quickly, but when I'm cold I get tons of PVC's and my hands and feet feel like they will fall off. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 1, 2012 Report Share Posted March 1, 2012 I am extremely heat intolerant for the last few years and every summer just waiting for winter. This winter I actually felt really ill when I would get cold, like I was setting off my ANS but in a different way than when I get hot. I am hyperPOTS. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 1, 2012 Report Share Posted March 1, 2012 For me, the warmer, the better, as long as there's no humidity. My hands and feet tend to always be cold, but not so much lately - maybe because of some of the meds I'm on?! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 1, 2012 Author Report Share Posted March 1, 2012 you on florinef? Quote Link to comment Share on other sites More sharing options...
Schorobi Posted March 1, 2012 Report Share Posted March 1, 2012 I feel cold all the time, have significant hypovolemia (on florinef and 10-12 gm Na diet/salt tabs), hyper with highest norepinephrine level 1770 (sitting, never had standing) Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted March 1, 2012 Report Share Posted March 1, 2012 I have hypovolemic POTS. I feel worse if it is very hot, but I also have Raynaud's so I can't stand the cold either (and cold for me is 65* or less lol!) I do best when it's between 70 and 85 degrees. (Maybe I should move to Hawaii?! ) Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted March 1, 2012 Report Share Posted March 1, 2012 My ANS is broken I actually have trouble with both. When I'm hot I get very dizzy very quickly, but when I'm cold I get tons of PVC's and my hands and feet feel like they will fall off.Yup, is me too! I explained it to my husband as a light switch - I'm either extremely hot and heading towards blacking out, or I'm completely frozen. I can't cool off or warm up on my own, and need to use cold packs and/or a heat pack or warm bath. I have dreams of one day becoming a "dimmer switch" Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 1, 2012 Report Share Posted March 1, 2012 My kids tease me that I have a 2 degree temperature range that I can tolerate. I'm not quite that bad actually, but it varies. For months I'll run really hot all the time, then it switches and my hands/feet are always freezing. Some of that may be med related but it was occurring before I was on any meds. Quote Link to comment Share on other sites More sharing options...
puppylove Posted March 1, 2012 Report Share Posted March 1, 2012 I'm always asking is it hot/ cold in here or it it just me? It's always just me. It fluctuates all the time for me too. Either I'm burning hot or my feet and hands are icecubes. I also seem to get the chills all the time. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted March 1, 2012 Report Share Posted March 1, 2012 I used to be the one freezing wearing sweaters in the summer..Two years ago I turned the air on 65 kept it there and now my husband is wearing the sweater.Recently, I am now both.... either freezing to death or burning up. It reminds me of Michael Jackson when he said he was cold and hot.Once I was going to do swim thearpy but when I got into the pool my body temp dropped so low... I almost had hypothermia.I guess my themometer is totally broken. Quote Link to comment Share on other sites More sharing options...
corina Posted March 1, 2012 Report Share Posted March 1, 2012 i'm a cold potsie, freezing cold in summer and in winters taking hot baths and back in bed with electric blanket to try stay warm. once i got on mestinon that changed for me and i could stay warm for about 4 hours. as soon as i got cold again i knew it was time for the meds it was a huge relief!now that i'm on octreotide (weaned off the mestinon) cold creeps in now and then again but not as bad as it used to be. Quote Link to comment Share on other sites More sharing options...
issie Posted March 1, 2012 Report Share Posted March 1, 2012 I'm a FAIR weather girl. I don't like it too hot or too cold. I guess if I had to choose one over the other I'd choose more hot than cold. I can't stand the cold. I wonder if that does say anything about what subset of POTS we are? Interesting thought Rama.Issie Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted March 1, 2012 Report Share Posted March 1, 2012 I definately do better in cold. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted March 1, 2012 Report Share Posted March 1, 2012 I am freezing cold all morning long. I sit with a space heater at work blasting me in the face all year long even in the summer. The weird thing with me is I warm up at night. I've noticed that I'm extremely peripherally constructed in the morning, my hands and feet turn white and I'm freezing cold, but then in the evening my blood starts pooling in my extremities and I warm up. I think it is related to high norepinephrine levels causing peripheral vasoconstriction. Quote Link to comment Share on other sites More sharing options...
E246 Posted March 1, 2012 Report Share Posted March 1, 2012 Always cold. Wear silk under layer including socks all winter. I always loved the sun and the heat but as I can't fly so I don't know how i would be now. Get hot flashes but have never been anywhere that is too hot for me before. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 1, 2012 Report Share Posted March 1, 2012 I am freezing cold all morning long. I sit with a space heater at work blasting me in the face all year long even in the summer. The weird thing with me is I warm up at night. I've noticed that I'm extremely peripherally constructed in the morning, my hands and feet turn white and I'm freezing cold, but then in the evening my blood starts pooling in my extremities and I warm up. I think it is related to high norepinephrine levels causing peripheral vasoconstriction.I'm the complete opposite. I am really hot, racy, sweaty in the morning and can go outside with no jacket, even in winter. As the day wears on, I get colder and colder, by late afternoon I'm freezing. I go to bed feeling cold, but somewhere in the middle of the night, I get really HOT and am throwing blankets off. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 1, 2012 Report Share Posted March 1, 2012 you on florinef?yes rama, I take florinef .1 mg twice a day. Quote Link to comment Share on other sites More sharing options...
issie Posted March 1, 2012 Report Share Posted March 1, 2012 I am freezing cold all morning long. I sit with a space heater at work blasting me in the face all year long even in the summer. The weird thing with me is I warm up at night. I've noticed that I'm extremely peripherally constructed in the morning, my hands and feet turn white and I'm freezing cold, but then in the evening my blood starts pooling in my extremities and I warm up. I think it is related to high norepinephrine levels causing peripheral vasoconstriction.That's so funny because it's looking like most of us that are HyperPOTS are the ones perferring the heat and the ones with overly vasoconstriction issues.Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted March 1, 2012 Report Share Posted March 1, 2012 I agree issie Quote Link to comment Share on other sites More sharing options...
issie Posted March 1, 2012 Report Share Posted March 1, 2012 If you think about it. I've suspected that I'm overly constricted and that's what's causing the pooling issues - at least in my limbs. Heat vasodilates. But, for us that may be stomach poolers - a hot shower for too long will also make us worse. So, could there be too much constriction in one place and not enough in another? Interesting discussion. I know, if my shower is too hot - I get very trembelous and weak and naseau is one of the worst symptoms. So, that makes me wonder. Maybe, if we just wore abdominal binders and not support hose - wonder if that would help? I'm going to put mine on and see what happens today. Another experiment in the process.Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted March 1, 2012 Report Share Posted March 1, 2012 My doc said we are overly constricted in our arteries but too dilated in our veins so that is why some of us experience the peripheral constriction- the norepinephrine is being over produced to counteract the venous dilation in our gut. Norepinephrine is a potent peripheral artery constrictor. He said we need to think of it in terms of arteries and veins. The veins are too dilated and the arteries are too constricted. Quote Link to comment Share on other sites More sharing options...
issie Posted March 1, 2012 Report Share Posted March 1, 2012 Okay, so how do you fix that? If we take things to vasodilate then that might vasodilate the arteries even more. So, the end results would be our legs and arms feel better and our blood is flowing better - but, we still have the abdominal issues with the arteries - only increased now. Still, went and put my ab. compression belt on - see if it helps. I know wearing compression hose - didn't help me. It makes my bp go up even higher and it caused my neuropathies in my feet and legs to be worse - probably compounded the lack of blood flow in the limbs. Since, I haven't been wearing them for the last 2 months - things feel better in some senses. Quote Link to comment Share on other sites More sharing options...
kclynn Posted March 1, 2012 Report Share Posted March 1, 2012 My son prefers the middle He is miserable in winter, though. I think the worst is temperature changes. He is better in the heat unless it gets over 90's and humid. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted March 1, 2012 Report Share Posted March 1, 2012 He said the norepinephrine related peripheral constriction is a compensatory reaction to the vasodilation in the gut. So if you constrict the gut with something like octreotide it should lower the sympathetic activity. Which according to a lot of folks it does work. I believe corina has had a lot of success with it Quote Link to comment Share on other sites More sharing options...
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