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Hot Versus Cold Potsies? Any Difference?


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I'm super-sensitive to heat - anything over ~80F sends me into a nasty state. But I also have found that I'm more sensitive to cold than I used to be; it's less my extremities and more that I just can't get my central core to heat up and I get cold very easily even if it's not that cold in the room.

My neurologist has told me to try taking cool or warm showers/baths instead of hot ones, but I can't stand being that cold! (plus it's worse on my joints and muscle tension and pain)

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It's super expensive and I don't have the money for it. Not sure insurance would approve it either. Any other alternatives?

I know I've heard that. I think the only thing that is kind of comparable is midodrine, but that is more a peripheral constrictor and I know you did not like that one. I would maybe try a natural somatostatin agonist or a peptide antagonist. I believe capsaicin is a proven antagonist of several dilatory gut peptides.

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Well, that's easy to come by. So, maybe will try that out. Capsaicin. Have you tried it yet? I have some red pepper as a spice in my cabinet. What would be a natural somatostaion agonist or peptide antagonist? I'm sure you've already figured that one out and it will save me research. I know I don't want to constirct perpherially.

Saying I didn't like mindodrine is an understatement. LOL - It was one of the worst reactions I've had to things. :) Not going there again.

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Here you go issie. CCK is one of the gut peptides that is inhibited by octreotide. Read through the whole thing. I think a lot will stick out to you in regards to our symptoms. It also mentions that capscasin is a natural antagonist of it.

http://en.m.wikipedia.org/wiki/Cholecystokinin

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I used to love summer -- many years ago. Now I hate it. I do so badly in summer. Heat is bad and I have increased symptoms. I was not sweating for 6 years and I must say I used to like the humidity then, but now I've swung the other way and sweat way too much I can't handle humidity very well.

My body runs hot just about all the time.

I much prefer winter. Although, where I live in Australia our winters are hardly harsh. I sometimes have trouble with the cold -- will suddenly get too cold and feet will hurt from cold no matter how the blankets I wrap around them but this happens only on occasions. Whereas in the summer I am too hot and too sweaty nearly all the time.

In winter when when in bed my husband is covered by a 5 blanket thick feather 'doona' (comforter? -- not sure what you guys call them)but I get by with a very, very lightweight blanket

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I have issues with hot flashes and severe chills. I am heat intolerant but also can't stand to feel a draft around my neck (that will cause me to get cold and stay that way for hours.) If I get fatigued (which happens everyday around 1 pm), I get very cold and have to bundle under several layers of clothes and blankets, including covering my head and neck, and take a nap. For some reason, I can not get warm if I don't sleep. Then, I usually wake up 1-2 hours later having a severe hot flash and sometimes gasping for air from the heat. When I walk the dog, I have to sit on the porch until my HR and respiration come back to a resting rate before entering the heated house. If I go in the house too soon, I become very overwhelmed by the heat and have severe presyncopal episodes. Sometimes I have to take lukewarm/cool showers and others hot just to regulate my body temp. In the summer, I have to be uber careful because I have experienced heat stroke the last 3 summers even from just walking a short distance in only about 85 degrees. My body just simply can not regulate its temperature and reaction to the environmental temperature any more. I, too, use "alternate" methods of temp regulation like ice packs, showers of various temps, heating pads, drinking hot or cold liquids, and snuggling up to my chocolate lab. :P

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I am like Blue and Naomi - very heat intolerant. I think I mentioned elsewhere Rama that my most comfortable temperature is 16degree celsius (don't know what that is in Farenheit). Anything above 24degrees and I get increased light headedness, fatigue and dizziness. Anything above 30degree and I absolutely must be inside in the air conditioner. I can only be outside for very short stints. The symptom MOST affected by the heat is my breathing. I really have great difficulty breathing in warm/hot air. Mast cell medications have really helped me, and now I am finding I am coping much better in those warmer temperatures.

I don't know what type of POTS I have, but I also get the severe vasoconstriction in the hands and feet happening.

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I am like Blue and Naomi - very heat intolerant. I think I mentioned elsewhere Rama that my most comfortable temperature is 16degree celsius (don't know what that is in Farenheit). Anything above 24degrees and I get increased light headedness, fatigue and dizziness. Anything above 30degree and I absolutely must be inside in the air conditioner. I can only be outside for very short stints. ........... Mast cell medications have really helped me, and now I am finding I am coping much better in those warmer temperatures.

I don't know what type of POTS I have, but I also get the severe vasoconstriction in the hands and feet happening.

---------------------------------------------------

I don't know what type of POTS I have, either lotusflower. Sometimes I seem to fit one category better and at other times it's the other??? Your reaction to heat does sounds much like mine. 16 degress c outside sounds just right for me I don't have airconditioning at home (but I'm looking to move to somewhere that has it before our next summer) and this summer in Australia (being the coldest in about 50 years has still been way too hot for me) has almost finished me.

In summer, when I go out, I'm trying to look presentable in the minimum of clothes decent for a 56 year old woman. In winter I'm often out and about t-shirt and jeans while everyone else is well rugged up.

I was wondering what mast stabliser medications you take?

.

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blue: oh man, yes. When I was first having symptoms, I walked into my doctor's reception wearing sandals, shorts, and a camisole, with an overshirt in my bag. The receptionist said "Well, you're sure dressed for summer, honey!" in a really disparaging voice, totally ignoring the sweat literally pouring off of me. I was not pleased :^) Not looking forward to the coming summer (I'm in the States) - even here in Seattle it gets a little warm (80F max most of the time) and the thigh-high compression and abdominal binder are not so happy then, I fear.

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A rhyme a friend taught me: "30 is hot, 20 is nice, 10 is cold, and 0 is ice." Maybe we could rewrite it for the temperature-sensitive folks: "30 - far too much, 20 might be okay, 10 can be cold, and 0's a very bad day." (or something like that - my poetry is not up to snuff this morning)

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Thanks Corina for the conversion. Love your work Peregrine!

Blue, I don't really feel like I fit into any POTS subtype either. I feel like I change a lot. I'm guessing you're somewhere in middle or northern Australia if you're having the coldest summer in over 50 years. You've probably had lots of humidity and that can be a real killer. I found that out the hard way last year. I think humidity is almost worse than high temperatures. Like you, I can also sometimes tolerate walking around outside in just in t-shirt in Winter. People must think I'm mad!

I am currently taking Claratyne and Zantac together and it really helped my breathing especially when I was in a terrible breathing flare. I just added Singualr (an asthma med usually prescribed for children in Australia) and that helped some more. I am so relieved summer is coming to an end! Will be able to sleep better at night and not have to have the air conditioner on all night long.

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Sorry, I forgot to explain that Claratyne, Zantac and Singulair are commonly prescribed mast cell mediations. They aren't mast cell stabilisers per se, like Sodium Cromoglycate, but the Claratyne does H1 suppression, the Zantac does H2 suppression, and the Singulair is a leukotriene inhibitor.

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My ANS is broken :P

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.

This is me, too :P

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High heat + high humidity can be a real problem for me. My body doesn't seem to start to sweat until I'm not feeling good or am sick. My extremities usually feel icy.

I'm generally always cold. Body temp runs on the lower side (96F/35.5C). I also have a problem with chills (flu-like chills, the ones that are just flat-out painful). Once I get chilled, there's practically no way for my body to get un-chilled without some external heat source. I had this happen last month and even after 2 hours of being in bed underneath a heavy jacket + comforter + blanket, I still had the chills. A long warm shower took care of that, but left me with the POTSy fun of dizziness & lightheadeness. Given the two, I'll gladly take dizzy over having the chills.

Cold weather doesn't cause increased POTS systems for me; I just get chilled way too easily. Even in the summertime I still sleep with an electric blanket gently going.

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bunny, have you considered getting a heated mattress pad to put on your bed? Mine has two zones with separate controls (one for me and one for him), and it allows me to "pre-heat" the bed before I get in. I usually turn it off or turn it to low at that point so I don't overheat in the middle of the night, but you might find it useful. Unlike an electric blanket it has a 10-hour timeout, so it runs all night long. The only problem I have with them is that they tend to lose effectiveness after a few years of use, but they have a 5-year warranty and have been happy to fix them in the past (you just ship them back after calling the company). When I'm super-cold I'm like you - I need an external heat source. Electric blankets are my choice unless I need to shower - I agree, then I get lightheaded! No fun. (thank goodness for my shower stool)

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peregrine: I've actually been using electric blankets/mattress pads for some 15 years now. Initially my Dr had me using it back in the anorexic days to keep me from burning cals for body heat. Since then I've used it to make up for the fact that I do get cold easily. I just bought a new electric blanket back in October after my last blanket stopped heating. I absolutely love it! It has a programmable pre-heat setting so it comes on before I get in bed. You can also program the off-timer. I think it's something like 3/6/10 hours. Heavenly. Unfortunately last month's incident happened at a hotel and not my usual cozy bed.

The shower stool is a good idea. I've had them in the hospitals. I've been reluctant to get one for home, for particularly no good reason. I ponder it then tell myself that I'm not that sick. Although I do usually wear my helmet in the shower and for a little bit afterwards. Sometimes I'll make it through the shower fine, then it'll hit me when I get out of the shower and start to dry off.

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I have trouble with both. Being outside on really hot humid days make me incredibly symptomatic. Although I had days last summer where it was 95 and I had goosebumps and almost went inside to grab a sweater. I actually made my husband leave flannel sheets on our bed all summer! My symptoms eased way up when the weather cooled off in the fall. The only problem I have now though is I'm freezing all the time. It seems like I can't keep warm. I actually had days at work where my lips turned purple. I just tell people my thermostat is broken!

I am getting nervous now that the weather is warming up...I just don't want to end up super symptomatic again.

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How many people here are in northern climates vs. southern/tropical climates? Home base for me is Florida, but work takes me to the northeast a bit. I used to absolutely struggle with the climate change, with it taking me 5-7 days before I wasn't freezing. Lately the first 24 hours are rough, but after that I seem to adjust reasonably well. I've also been debating taking a job up in the northeast and have been a bit worried what being in the cold climate full-time would be like.

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bunny: Makes sense (re: both blanket and shower issues). You can always pretend that the stool is there to help you wash your legs (which sometimes helps for me when I'm feeling particularly miffed about needing it). Mine is from ikea and therefore doesn't feel quite as "medical equipment" if that makes sense. Regarding climates - I live in Seattle which is warmish in the summer (70s-80s) and coolish in the winter (40s, sometimes down to 30s or up to 50s) and it's pretty good, although I'm worried about the combo of compression gear (stockings plus binder) with the heat.

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