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Colder Weather Is Here!


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My doctors have emphasized how heat can make dysautonomia patients feel worse. Makes sense because it makes our pooling worse, which makes us more fatigued and tachycardic. Also, heat makes my small fiber neuropathy pain worse (burning feet, hands, and face).

So why am I so painful now that temps are down in the 40's and 50's (farenheight)? And why am I having such a hard time sleeping? It seems that I'm so cold on the inside but my skin burns on the outside and I just cannot get comfortable. :)

We've talked a lot lately about how heat makes us feel worse. How does the cold weather affect your dysautonomia symptoms?

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I haven't been in true cold weather since learning about autonomic probs and specific symptoms to keep an eye on... however, when I lived in the midwest, fall was my "season of renewal" whereas I guess spring is supposed to be! In the cool I felt mental clarity, not necessarily extra "ability" or anything, but just feeling clearer and more able to concentrate.

Winter was somewhat similar except going in to an overheated indoor area immediately crushed my ability to think. Luckily I lived in a semi-heated area (garage) so much of my time was pleasantly cool. When I worked 12 hr shift manufacturing plant work, thankfully it was in large semi-heated areas or I'd not have survived.

Living in a generally warm area now, I notice this effect day to day... even hour to hour (the weather changes that quickly here)... though I think when I was in a more consistent cold climate it snowballed in a positive way. I may return to that if other interventions don't help enough.

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I HAD to go home wrapped up in a warmmed up blanket as my hands started to turn many shades of colors and I was freezing while waiting for my cab after today's infusion...My electric matress pad is on and warming me now... I really dislike being cold! :)

bellamia~

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I HAD to go home wrapped up in a warmmed up blanket as my hands started to turn many shades of colors and I was freezing while waiting for my cab after today's infusion...My electric matress pad is on and warming me now... I really dislike being cold! :)

bellamia~

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I live in South Florida so cold weather is rare here. This climate really isn't kind to my POTS. I lived in Vermont for a year and did so much better. The cold allowed me to be out and about more. I was able to walk all around downtown without getting symptomatic. Most of my symptoms really eased up. It was a blessing to my POTS but too cold and miserable too many months out of the year for me. I need to move somewhere in-between!

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Heat makes me feel like I have no energy and can't stand for long at all. The cold makes my body have to work hard. It is a different sort of exhaustion - kind of a deeper tiredness. Does that make any sense. 70 degrees is perfect for me!

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Stuff below 40 wasn't great for me - get below 20 and I did really bad. The freezing Midwestern winter mornings getting to work with below 0 windchill made my tachy worse than summer!

I don't think my circulation was working too great in the 'super cold' periods. I had to bundle up more than ever with POTS and still couldn't keep my hands and feet warm.

It's one of the reasons I had to move. I don't know if I could've got through another winter. :)

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Cold is so much better for me than hot. I'm THRILLED summer is over!

Although my husband almost had to take me to the emergency room in January. We were at the Inaugural Parade, and it was so cold out, I was actually shuddering, not just shivering.

Amy

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Heat makes me feel like I have no energy and can't stand for long at all. The cold makes my body have to work hard. It is a different sort of exhaustion - kind of a deeper tiredness. Does that make any sense. 70 degrees is perfect for me!

Makes perfect sense. I feel like that too!!!

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Does anyone else have flushing problems when it becomes cold??

Mine are a lot like rosacea. When I am cold for a prolonged time (like an hour), and then become warmer (like go inside), my face gets red and really, really hot and this lasts for hours and hours. The flushing was one of my first and more severe symptoms. I never ever turned red before getting sick.

The weird part is that I don't flush at all until the weather turns colder. I live in Northern CA, so I get about six months of absolutely no flushing, nothing can trigger it. But when it's cold, I just dread everyday. I find that when I flush, my body temperature will go from like 96 to near 100 within minutes. It will stay that high for my whole flush. Does anyone else have this?

propranolol has helped it a lot, but I hate taking propranolol in the winter because it makes me soooooooo much more tired and enhances all my pressures when it's cloudy and grey.

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Cold is better for me than hot. I am actually not scared to go outside with my son and have to worry about getting sick. But today I was really cold and my fingers started to go numb and felt like someone was poking them with needles. It really hurt:( Then they started to turn blue and red. It was really weird. It was only in my left hand. Anyone else experience this?

Hope everyone is doing well.

Steph06

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Valliali, I think a "standard explanation" of flushing is to divert blood to surface tissues to facilitate heat exchange. When in cold, one would expect the opposite. If your body has been doing something to counter the cold, something to try to warm the core metabolically or with muscle activity, then you go inside perhaps it is inappropriately continuing that process. Then a flushing response could be explained by trying to then cool you down to counter the out of control internal warming. If that were the case, then the flushing itself would be "normal"... but the underlying overreactive/overextended temperature regulation response would be a dysfunction. Just a speculation, of course.

I suppose extreme cold exposure could be akin to "cold pressor response" like what some autonomic docs measure. We tend to have exaggerated response there as well. From memory, I think I'm usually refreshed even by extreme cold... though lately there is a funny thing personally: After a cold shower, I tend to sweat a lot! Maybe my body overdoes the "rewarming" process and then has to swing back the other way too???

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Very interesting thoughts, Erik. I mean, for me, it sure feels like my body is over-doing the warming process! I know that many rosaceans suffer from the same exact thing I am feeling - the hours long redness and burning in the face - from going from cold to warm. But I think the flushing with rosacea is a result from a blood vessel disorder in which they remain overdilated for abnormally long. Hence the reason most rosaceans also seem to experience the same kind of flushing in response to many things that trigger vasodilation, like warm foods, exercise, a hot day, etc etc. I do not flush in any other situation, and I also don't suspect that my issue is merely a blood vessel one since my body temperature shoots up and remains up for the entire flushing time (sometimes ten hours!). I have also noticed that in the warmer months, my body temp is almost always around 98-98.6. So my body doesn't really get "warmer." In the winter, my body temp is around 96.5, and like I said, when I get warmer, it shoots up to around 100.

I did visit a dermatologist, who mocked me out of his office for even suspecting that I had rosacea and continuously pointing out that "of course it's an autonomic problem." He didn't explain why - of course not. I think your theory sounds like what I'm feeling. However, what role do you think the propranolol has in helping? Because the propranolol reduces blood flow to extremities?

Thanks for your insights, Erik! It has been a very distressing symptom for me, though it is not necessarily the most physically threatening or uncomfortable. I just have to wonder why, if this is a "clear autonomic problem" like my derm said, I haven't read of anyone else with this same issue. I have read a lot of about others flushing, but mine doesn't sound anything like the more common flushing seen with autonomic issues - like in response to mast cells....

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Does anyone else have flushing problems when it becomes cold??

Yes! I was just noticing that today. I was feeling cold so I got under an electric blanket which brought on the flushing and temp went up to 99.3 (it's usually 96-97 degrees F). The burning of my face that accompanies the flushing is quite painful. I also get really red, hot feet and hands (they can get cold and frozen easily too). I think the sudden vasodilation brings on the flushing, whether it's due to adrenaline pumping more blood up to our brains or a sudden burst of heat that opens those blood vessels.

Thanks for posting about this. One of my first POTS symptoms was chronic frostbite manifested by purple toes and chilblains that lasted 4 months. But at night, I couldn't bear to have my feet under blanket because the heat made them so red and painful. It seems like my peripheral blood vessels are either really dilated or really constricted. I assume it's because of inappropriate vasomotor control due to small fiber neuropathy.

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Valliali, I think a "standard explanation" of flushing is to divert blood to surface tissues to facilitate heat exchange. I suppose extreme cold exposure could be akin to "cold pressor response" like what some autonomic docs measure. We tend to have exaggerated response there as well.

Makes perfect sense.

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thankful, that does sound exactly like what i have!!! how long does your flushing last? do you find that anything helps??? oddly enough for me, i find that sleeping will break one of my flushes. while they usually last like ten hours, if i were to sleep for even 15 minutes, a flush would be nearly gone. i assume that sleeping "resets" whatever system is off.

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A "beta-blocker" would suppress sites (or stimulatory agents of such sites) that stimulate vasodilation... the beta-adrenergic receptors. So those that are "vasoselective" or universal (not simply cardio-selective) would tend to counteract the "flush" signal directly. Beta activation = dilation = more blood. Beta-blockade means less of that... means less dilation... implies constriction and no flushey! Even if a beta-blocker MOSTLY is cardio-selective... they can still spill over to some extent (even varying by personal sensitivities).

But what the smooth muscle controlling dilation does is a complicated push & pull between many signals! Alpha-adrenergic, beta-adrenergic, histamine, kinin... maybe direct neuronal regulation? I always figure there could be yet-unknown regulators out there too! The only little rule I recall is that "alpha" trumps "beta"... but otherwise, which signal "wins" the battle is well beyond me! For example, an vasoconstricting alpha-agonist like norepinephrine would tend to "override" a beta-agonist like an asthma med (though those tend to be things selective to bronchioles... not veins). Not coincidentally a potential side effect of asthma meds is flushing!

Histamines hit the H1 & H2 receptors and have a very complicated overlayed coordinated or oppositional effect... for example, they can swing between causing vasoconstriction to causing vasodilation based on exact concentrations! Throw in "kinins" which act similar to histamine but are different and involved in different feedback loops and who knows what else... and you've got a pretty tricky picture that probably even the best braniacs out there don't fully understand!

Histamine Vaso-constriction/dilation Experiment:

http://www.ncbi.nlm.nih.gov/pubmed/16337938

I don't know what signal the body would tend to put out in response to "desire to cool oneself". It could lower the level of an alpha-agonist, raise a beta-agonist, go to a specific concentration of a histamine or kinin, and/or do something neuronally! And these can also create incidental impact elsewhere in the body to the extent that "selectivity" fails or confuses feedback mechanisms.

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I seem to have a 'temperature range' in which I function the best. Anything warmer than 78 degrees and I'm too hot, anything under about 65 and I'm too cold. Now if I could only find a place to live with those temperature ranges. I know Arizona is not it, and neither is Iowa!

Cheers,

Jana

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I seem to have a 'temperature range' in which I function the best. Anything warmer than 78 degrees and I'm too hot, anything under about 65 and I'm too cold. Now if I could only find a place to live with those temperature ranges. I know Arizona is not it, and neither is Iowa!

My inlaws live in Sonoma County, California. That sounds about like their weather!

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I have Raynaud's and small fiber neuropathy. I've always been in a lot of pain from the cold, even if it's air conditioning or the fridge at a grocery store. I do best in the low 80s. Cold makes me shiver and my body temp drop. I bundle up for outdoors with layers of thermals and jackets and use foot warmers or battery powered socks. I grew up and still live in a really warm climate where triple digits are constant for 6 to 8 weeks every summer, so maybe I'm just used to it.

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I do feel somewhat better now that fall and cooler temps are here. I feel like I can go outdoors more. I thought I read somewhere that people with pots have problems regulating body temp so when I do get cold it is sometimes hard to get warm yet I cannot stand to breathe in warm air or even have the heater on in the car in the winter. Very strange, just like alot of other things with pots.

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