Problems with temperature regulation?

[Meemee]

Hi! Not sure if this is the right forum to post on as I am new here! 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!!

p.s just realized that this is the wrong forum, not sure how to fix this so hope you dont mind!

[WinterSown]

A lot of dysautonomia patients have temp regulation problems. It's like the temperature dial only goes to high in either direction. I can't wear pressure socks because I overheat and can faint, but if I don't wear the pressure socks I can faint. No win there at all. It's winter and I'm in my office barefoot and wearing a summer shift. I also have a space heater going and aimed at my pelvis which is always hurting somewhere.  Remember the movie Annie Hall and she dressed in layers--this is what you need to do. I have all manner of vests, sweaters and leggings in different thickness/warmth. I hate the temperature swings especially sweating like rain. I had to be more flexible with myself and change my clothes as needed rather than wearing the same thing all day that I put on in the morning. Definitely talk about this with your doctor and try to find ways where you can be more comfortable.

 

[edriscoll]

I also have temperature swings so radical that I am frequently walking around the house in a sleeveless shirt with a zippered hoodie on but pulled down around my elbows.  This gives me the option of getting warm quickly but cooling down quickly as well.  Some days are fine but I always need to be aware of overheating and be able to respond quickly.  If you are not sweating, you need to discuss that with your doctor right away.  Also, remember that when you do sweat you are losing a lot of fluid and sodium, so electrolyte-rich drinks are important.  One item that I discovered that has been a life saver for me, especially in the summer months,  are cooling towels.  They are available online or in most sporting goods stores.  They are lightweight towels that come in different sizes.  They stay cool and can be worn around your neck (my fave), wrapped around your head like a bandana or just used to cool your face and wrists (pressure points).  There are also cooling vests that keep your core cool.  I haven't used one myself, but I have heard from several people that they work quite well. But again, if you are not sweating, please consult with your doctor.  Dressing in layers and taking precautions is important.  Temperature dysregulation is a common symptom and can be a distressful one.  But there are ways to handle it and it will get better.   

[Pistol]

Unfortunately the temperature intolerance is one of my biggest problems. In the winter I cannot go for walks b/c of the cold which triggers my symptoms, and in the summer it is the same with the heat. So I stay mostly indoors in the extreme temps and exercise there but in spring and fall I start to walk outdoors daily, every day a little more. I also are unable to sweat ( which makes hot flashes - I am of that age - unbearable ). I constantly put on or take off my clothes as well and use cooling itmes in the summer. I find fans very effective. 

[Meemee]

On 3/8/2019 at 3:58 PM, FileTrekker said:

Yeah, getting body temperature right is hard. I'm always either far too cold or boiling hot.

Same!

[Meemee]

On 3/8/2019 at 4:35 PM, WinterSown said:

A lot of dysautonomia patients have temp regulation problems. It's like the temperature dial only goes to high in either direction. I can't wear pressure socks because I overheat and can faint, but if I don't wear the pressure socks I can faint. No win there at all. It's winter and I'm in my office barefoot and wearing a summer shift. I also have a space heater going and aimed at my pelvis which is always hurting somewhere.  Remember the movie Annie Hall and she dressed in layers--this is what you need to do. I have all manner of vests, sweaters and leggings in different thickness/warmth. I hate the temperature swings especially sweating like rain. I had to be more flexible with myself and change my clothes as needed rather than wearing the same thing all day that I put on in the morning. Definitely talk about this with your doctor and try to find ways where you can be more comfortable.

 

Thanks for the advice, you have been very helpful xx

[Meemee]

On 3/9/2019 at 1:29 PM, edriscoll said:

I also have temperature swings so radical that I am frequently walking around the house in a sleeveless shirt with a zippered hoodie on but pulled down around my elbows.  This gives me the option of getting warm quickly but cooling down quickly as well.  Some days are fine but I always need to be aware of overheating and be able to respond quickly.  If you are not sweating, you need to discuss that with your doctor right away.  Also, remember that when you do sweat you are losing a lot of fluid and sodium, so electrolyte-rich drinks are important.  One item that I discovered that has been a life saver for me, especially in the summer months,  are cooling towels.  They are available online or in most sporting goods stores.  They are lightweight towels that come in different sizes.  They stay cool and can be worn around your neck (my fave), wrapped around your head like a bandana or just used to cool your face and wrists (pressure points).  There are also cooling vests that keep your core cool.  I haven't used one myself, but I have heard from several people that they work quite well. But again, if you are not sweating, please consult with your doctor.  Dressing in layers and taking precautions is important.  Temperature dysregulation is a common symptom and can be a distressful one.  But there are ways to handle it and it will get better.   

I love the sound of cooling towels! Thank you for your help  xx

[Meemee]

8 hours ago, Pistol said:

Unfortunately the temperature intolerance is one of my biggest problems. In the winter I cannot go for walks b/c of the cold which triggers my symptoms, and in the summer it is the same with the heat. So I stay mostly indoors in the extreme temps and exercise there but in spring and fall I start to walk outdoors daily, every day a little more. I also are unable to sweat ( which makes hot flashes - I am of that age - unbearable ). I constantly put on or take off my clothes as well and use cooling itmes in the summer. I find fans very effective. 

Im sorry to hear it is affecting you so much 😕 hoping you find a more permanent solution soon xx

[Guest ScottS]

I struggle staying warm enough even when outside temps are in what most people I know would consider a comfortable range. If I let myself get too cold, all sorts of POTS related troubles will kick in. Just last week I decided to prune a pair of full sized (20 year old) grape vines I have growing in my back yard. Now, pruning grapes properly can be quite a bit of work (to get them right for the upcoming growing season). It took me just shy of 3.5 hours to trim both vines to their proper size and configuration. Working from around 1:00 PM to 4:30 PM with the sun out on an unusually temperate late winter day AND dressed warmly in layers I thought I would be in the clear. Well, I was wrong. Just as I was finishing up a wave of palpitations came over me followed by some off and on and at times uncontrollable shivering and shaking. The back of my neck grew oddly flush and my head started aching. (Jn fact, felt like it might split apart ear to ear.) I went inside and tucked up in a ball in the very chair I'm sitting in now with my trusty space heater by my side oscillating just a few feet away, cursing both my dysautonomia and my foolishness. I've lived with POTS for (at least) a generation longer than you've been alive. One adapts because you have no choice. And, sometimes, you screw up and don't do what's best for you. If anything, living with POTS is a trial by fire and you live and you learn experience. 

PS I also struggle with extremes of heat and, especially, heat and humidity. In fact, one reason why I chose to live where I do (high Rocky Mountain Utah) is the (rather rarified) dry climate here. I can take the odd 90 degree (low humidity) summer day just fine, especially when I'm well hydrated and have a damp cooling rag nearby that I can wrap around my neck when I feel over heated. Heat combined with humidity, though, can wipe me out.

[JimL]

Never used to be cold before this. Maybe it's the weight loss too, but I laughed at the locals when they'd put a parka on when it was 32 out. I used to go outside in shorts at that temp. Now I feel cold. The heat hasn't hit yet, but I am not looking forward to possibly finding out I can't take that either, although I used to handle cold much better than heat. I've seen 123 here. 

[Meemee]

3 hours ago, ScottS said:

I struggle staying warm enough even when outside temps are in what most people I know would consider a comfortable range. If I let myself get too cold, all sorts of POTS related troubles will kick in. Just last week I decided to prune a pair of full sized (20 year old) grape vines I have growing in my back yard. Now, pruning grapes properly can be quite a bit of work (to get them right for the upcoming growing season). It took me just shy of 3.5 hours to trim both vines to their proper size and configuration. Working from around 1:00 PM to 4:30 PM with the sun out on an unusually temperate late winter day AND dressed warmly in layers I thought I would be in the clear. Well, I was wrong. Just as I was finishing up a wave of palpitations came over me followed by some off and on and at times uncontrollable shivering and shaking. The back of my neck grew oddly flush and my head started aching. (Jn fact, felt like it might split apart ear to ear.) I went inside and tucked up in a ball in the very chair I'm sitting in now with my trusty space heater by my side oscillating just a few feet away, cursing both my dysautonomia and my foolishness. I've lived with POTS for (at least) a generation longer than you've been alive. One adapts because you have no choice. And, sometimes, you screw up and don't do what's best for you. If anything, living with POTS is a trial by fire and you live and you learn experience. 

PS I also struggle with extremes of heat and, especially, heat and humidity. In fact, one reason why I chose to live where I do (high Rocky Mountain Utah) is the (rather rarified) dry climate here. I can take the odd 90 degree (low humidity) summer day just fine, especially when I'm well hydrated and have a damp cooling rag nearby that I can wrap around my neck when I feel over heated. Heat combined with humidity, though, can wipe me out.

Sorry to hear you had such a disconcerting experience with the palpitations and such! Thank you for your comment, its nice to know I'm not alone   

[Meemee]

55 minutes ago, JimL said:

Never used to be cold before this. Maybe it's the weight loss too, but I laughed at the locals when they'd put a parka on when it was 32 out. I used to go outside in shorts at that temp. Now I feel cold. The heat hasn't hit yet, but I am not looking forward to possibly finding out I can't take that either, although I used to handle cold much better than heat. I've seen 123 here. 

Hoping it wont get too hot where you are!

[JimL]

3 hours ago, Meemee said:

Hoping it wont get too hot where you are!

It always does. Once it gets much above 105, it sucks. The humidity is low, so 90-95 is ok here. Not like FL at all, easy to deal with, but at a certain point it doesn't matter anymore. I used to go hiking 4:30 in the morning during those 110+ days as it would be 93 and dark out. Once the sun comes up, it's torture.