My 9F Temperature Comfort Zone Is A Pain!

[sue1234]

I have known for a few years that heat is my enemy. But last winter I got a small dose of finding cold was becoming my enemy, too. Well, we got our first cold snap here, and on day one I am already fighting the temp in my house! Here is what happens to me in hot/cold:

Above 80F: -My hands begin to swell and turn beet red; fingernails are red

-I begin to itch on my back,then it spreads like wildfire across my upper body

-I get mentally dull, and get to the point that I feel like I'm going to faint

-I quickly turn a/c down

Below 71F: -My hands get real cold, and fingers turn white; fingernails are blue

-I reach a point that I feel like I'm going to faint, and find I get mentally anxious

-I quickly turn heater up

Does anyone else get like this??? I understand that in the heat, I am vasodilating. And in the cold, I am vasoconstricting. Both definitely must be doing that in my head, too, with the feeling of faintness. When I am at the extreme reaction phase of both heat and cold exposure(for me), it is scary!

Any thoughts on how to control this(other than control my environment/clothing---that's a given)? I didn't think there were many options, but if anyone knows of meds that work, please let me know. I just didn't think there was, as the meds would have to have opposite actions, which doesn't make sense!

[SarahA33]

Hi Sue,

Have you been checked for mast cell?

I have a terrible time with thermoregulation. My pots doc said that a lot his of dysautonomia;s patients hardest thing to control is heat intolorance.. he said our switches are "broken" and maintaining a proper thermo response is a true function of the autonomic nervous system, and since our system's aren;t functioning properly it's really hard to find a comfortable temperate control. Too hot in 30 weather and too cold in 90 degree weather. I break out in sweats sitting in a room that's 68 degrees and at night is when I find it the most difficult. The waking up in sweats from head to toe is the most terrible feeling.

I wish I had more to offer in the advice relm, but I don't, just that I go through the same things.

[artluvr09]

I have chilblains where if I am hot and my feet get hot they get real red and my toes get bumps and itch like crazy. I also have raynauds so they are sensitive to cold and when they are cold the turn white to purple then as they warm up they turn red.

When I get hot I don't feel good. I get where my face gets red and my hands get red and puffy, then I get lightheaded and anxious. When I am really cold my fingers and toes go numb and change colors and I feel sleepy but other than that I feel fine with cold. Well my asthma acts up sometimes if I try to work out and tis cold. But I would prefer cold to heat anyday! Maybe keep a portable desk fan with you so when you are hot you can cool yourself withiout getting too cold. and when your cold maybe try putting the heat up a little and wearing layers.

[gjensen]

I do not have some of the challenges mentioned, but I am certainly more sensitive to temperatures on both ends.

In the heat, my OI is definitely worse. It does not take much of a chill to get me shaking like a leaf in the wind. It can even be pretty dramatic. I do find myself trying to maintain a tighter comfort zone. This symptom has bothered me some, as I was very active and took some pride in being able to tolerate extremes.

[sue1234]

Sarah, no, I have not tested for mast cell. I tried antihistamines a couple of years ago to see if I would get any benefit and I did not. I tried a few different kinds, and actually, it almost seemed to make me feel worse. I get really hot in the middle of the night, also. It is like I cover up from the cool air temps, but after a few hours of body heat circulating, I then cannot regulate that so get too warm/hot. Back and forth all night.

Artluvr, I know exactly what you're talking about regarding chilblains. No fun to have these severe reactions.

Gjensen, definitley having to keep a tighter comfort zone. I also used to be able to handle 98F summers with no problem, but not any more.

When I think about the itching thing when I get hot, it makes me think of when people are diagnosed with polycythemia(too many red blood cells). One of their symptoms is severe itching, especially on the lower legs, after a hot shower. For them, it is due to the many RBCs that have to travel through the tiny capillaries, and it makes me wonder if somehow due to the "pressure" on the area, it must be releasing histamine. That kind of sounds like what could be happening in some of our POTS. They have too many RBCs in their blood volume, leaving less "room" for plasma. We have too little blood volume, but is it with both RBCs and plasma? Does the ratio stay corrected when in low volume? If not, then we may have a false RBC elevation which could do the same thing as the polycythemia people. Possibly. Makes you wonder if polycythemia people don't really have too many RBCs, but not holding onto fluids in general, thus somewhat dehydrated like some of us. Oh well, just thinking out loud.