Problems with temperature regulation?

[Meemee]

Hi! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness.

Thank you!!

[StayAtHomeMom]

First I would start with talking to your doctor. They would have an idea about any medications may help. 

Second I have a hard time with extreme heat. Summers are brutal. In fact last summer there was a discussion about cooling your feet to cool off the rest of your body. Have you tried something similar to that?

Finding the triggers and avoiding or minimizing them can help you deal with your body issues. And most symptoms cycle. So just because this is your worse symptom now doesn't mean it still will be in 6 months. Try treating your body like a science experiment. Introduce things one at a time to see what helps and what doesn't. It is different for everyone. 

[angelloz]

At the beginning I had problems with temperature regulation. I would shiver and chill and go sit outside on a very hot day...then suddenly become so hot I would feel ill.  This symptom slowly improved over time but still pops up now and again. Ice on my wrists for heat and sometimes a hot bath was the only thing that would warm me up.

[Meemee]

35 minutes ago, StayAtHomeMom said:

First I would start with talking to your doctor. They would have an idea about any medications may help. 

Second I have a hard time with extreme heat. Summers are brutal. In fact last summer there was a discussion about cooling your feet to cool off the rest of your body. Have you tried something similar to that?

Finding the triggers and avoiding or minimizing them can help you deal with your body issues. And most symptoms cycle. So just because this is your worse symptom now doesn't mean it still will be in 6 months. Try treating your body like a science experiment. Introduce things one at a time to see what helps and what doesn't. It is different for everyone. 

Thanks for your response! I have another appointment in two weeks, so hopefully he can help me then  sorry to hear that you are struggling with this issue too,  I will give cooling my feet a go! 

[Meemee]

29 minutes ago, angelloz said:

At the beginning I had problems with temperature regulation. I would shiver and chill and go sit outside on a very hot day...then suddenly become so hot I would feel ill.  This symptom slowly improved over time but still pops up now and again. Ice on my wrists for heat and sometimes a hot bath was the only thing that would warm me up.

Im glad to hear you're not really struggling with this anymore  hopefully that will be the case for me! Did you ever find that attempting to heat up then suddenly made you too hot?

[RecipeForDisaster]

I have this to quite a degree... pyridostigmine helps somewhat, but nothing else really has. I have a rechargeable heating pad on me now because I was so cold and couldn't warm up.

[Meemee]

16 minutes ago, RecipeForDisaster said:

I have this to quite a degree... pyridostigmine helps somewhat, but nothing else really has. I have a rechargeable heating pad on me now because I was so cold and couldn't warm up.

Ill suggest that to my doctor the next time I see him! Thank you

[Guest KiminOrlando]

The inability to sweat is very significant here. Make sure your doctor hears this. They can test for this and it is diagnostically relevant. I think it is called the QSART test? It has been so long and my brain is foggy.

Did you use a thermometer to check your temperature or are you just going off of how you feel? If you feel chilled, but your body temp is normal, that is different than feeling cold and your body temp is low as well. I would suggest keeping a log of what triggered the feeling, temperatures outside and your body, how long to recover, etc, so your doctors can analyze the data and maybe help you. Good physicians like lots of data in my experience. 

[JimL]

When I wake up, my temp is often 96.8ish. As the day goes on it goes up and if I am up on my feet making dinner, after I eat it can be 99 or a little more, but it goes down after dinner if I lay down. When I heat up at dinner, I feel really flush. Tonight I took my vitals and it was 122/78/114bpm/99.3F. That was sitting down. When I wake up, normally my heart rate is 60-68 and bp 110/70. This stuff is just nuts. 

[Meemee]

34 minutes ago, KiminOrlando said:

The inability to sweat is very significant here. Make sure your doctor hears this. They can test for this and it is diagnostically relevant. I think it is called the QSART test? It has been so long and my brain is foggy.

Did you use a thermometer to check your temperature or are you just going off of how you feel? If you feel chilled, but your body temp is normal, that is different than feeling cold and your body temp is low as well. I would suggest keeping a log of what triggered the feeling, temperatures outside and your body, how long to recover, etc, so your doctors can analyze the data and maybe help you. Good physicians like lots of data in my experience. 

Keeping a log is a good idea! I hear that the inability to sweat is not very treatable so a bit worried about that... many thanks!

[Meemee]

10 minutes ago, JimL said:

When I wake up, my temp is often 96.8ish. As the day goes on it goes up and if I am up on my feet making dinner, after I eat it can be 99 or a little more, but it goes down after dinner if I lay down. When I heat up at dinner, I feel really flush. Tonight I took my vitals and it was 122/78/114bpm/99.3F. That was sitting down. When I wake up, normally my heart rate is 60-68 and bp 110/70. This stuff is just nuts. 

Yes I really struggle when I cook dinner too! 

 

11 minutes ago, JimL said:

When I wake up, my temp is often 96.8ish. As the day goes on it goes up and if I am up on my feet making dinner, after I eat it can be 99 or a little more, but it goes down after dinner if I lay down. When I heat up at dinner, I feel really flush. Tonight I took my vitals and it was 122/78/114bpm/99.3F. That was sitting down. When I wake up, normally my heart rate is 60-68 and bp 110/70. This stuff is just nuts. 

 

[JimL]

2 hours ago, Meemee said:

Yes I really struggle when I cook dinner too! 

 

 

 

 

I guess it's not unusual for people with POTS? I have so much I have to do. I am a hands on person and take care of all the hands on stuff with the house and cars and then there is work. My boss is letting me work from home until surgery later this month for cervical fusion, but after that, if I haven't learned how to deal with this better, I have problems. 

[JimL]

9 hours ago, Meemee said:

Hi! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness.

Thank you!!

Do the blood vessels in your head bulge? I get the redness too and the veins in my forehead pop out. 

[Pistol]

@Meemee - I have hyper-POTS and also struggle with temperature intolerance and fluctuations. When it is cold outside ( I live in the north east ) I have to stay indoors or immediately turn freezing, with ice ocld feet and hands that are difficult to heat back up. If it is warm outside I can only tolerate a few minutes until I feel like passing out and need to go inside. Cooling supplies such as cooling packs or collars have been helpful in those times. I also do not usually sweat at all unless i am close to passing out or have hypoglycemia. My temperature also fluctuates and sometimes I feel exactly like I have a fever but I have no elevated temperature. Go figure! I have not yet found a way to improve this symptom except to avoid heat/ cold.

[bombsh3ll]

I too struggle with temperatures - I believe at least in my case it is due to low blood volume as I seem to sweat, vasoconstrict & vasodilate appropriately, however the mechanism can vary from person to person. 

I live in Scotland, UK, so feeling cold is commoner for me - however I do not tolerate heat so when family turn the heating on, I suffer. 

What I find best is to just warm the parts of me that are cold ie hands and feet rather than my whole body. 

These are the things that help me, some of these things look really geriatric, especially as you are young, but I love them;

For warming:

Hot water bottle with fluffy cover - for hands

Electric rechargeable Cookey hand warmer. 

Beurer plug in electric foot warmer.

Electric blanket on my bed.

For cooling:

Hand held fan

Ice pack (wrapped in cloth)

Spray bottle with water (this is really simple, cheap and portable and has staved off many a faint for me)

I hope you manage to find some relief.

B x 

 

[Meemee]

9 hours ago, JimL said:

I guess it's not unusual for people with POTS? I have so much I have to do. I am a hands on person and take care of all the hands on stuff with the house and cars and then there is work. My boss is letting me work from home until surgery later this month for cervical fusion, but after that, if I haven't learned how to deal with this better, I have problems. 

It must be, good luck with your surgery!

[Meemee]

1 hour ago, bombsh3ll said:

I too struggle with temperatures - I believe at least in my case it is due to low blood volume as I seem to sweat, vasoconstrict & vasodilate appropriately, however the mechanism can vary from person to person. 

I live in Scotland, UK, so feeling cold is commoner for me - however I do not tolerate heat so when family turn the heating on, I suffer. 

What I find best is to just warm the parts of me that are cold ie hands and feet rather than my whole body. 

These are the things that help me, some of these things look really geriatric, especially as you are young, but I love them;

For warming:

Hot water bottle with fluffy cover - for hands

Electric rechargeable Cookey hand warmer. 

Beurer plug in electric foot warmer.

Electric blanket on my bed.

For cooling:

Hand held fan

Ice pack (wrapped in cloth)

Spray bottle with water (this is really simple, cheap and portable and has staved off many a faint for me)

I hope you manage to find some relief.

B x 

 

Thanks for your response, you have been very helpful! I will make sure I give that a go, best wishes

[Meemee]

6 hours ago, Pistol said:

@Meemee - I have hyper-POTS and also struggle with temperature intolerance and fluctuations. When it is cold outside ( I live in the north east ) I have to stay indoors or immediately turn freezing, with ice ocld feet and hands that are difficult to heat back up. If it is warm outside I can only tolerate a few minutes until I feel like passing out and need to go inside. Cooling supplies such as cooling packs or collars have been helpful in those times. I also do not usually sweat at all unless i am close to passing out or have hypoglycemia. My temperature also fluctuates and sometimes I feel exactly like I have a fever but I have no elevated temperature. Go figure! I have not yet found a way to improve this symptom except to avoid heat/ cold.

I suspect I have hyper-POTs also, its awful isn't it! Seems I have many of the same symptoms as you 😕 I hope you find a good way to cope with this, good luck!

[angelloz]

I also wanted to mention that although temperature issue have improved somewhat over time, I still get blazing hot every night a few minutes after I lie down then it eases. Positional change? That’s all I can come up with. I did have a sweat test done a few years ago that showed reduced sweating on some areas of my body. Oddly, an area on my forehead that they said they see on migrainers. I have had chronic migraines for 30 years. 

[Heartbroken]

I am exactly like you Pistol. You saved me some typing😂 

[JimL]

On 3/6/2019 at 7:31 AM, Meemee said:

It must be, good luck with your surgery!

Thanks. Back to work tomorrow. Eegads.