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Extreme Heat Intolerance.


Tanzanite
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I have the feeling I'm going to be alone on this one but here goes... my heat intolerance has become so bad I need the ac on permanently apart from if it's less than 2c in the day/night. I cannot stand the room being more than 18.5c and sometimes even then the air feels stuffy and warm to me and I need the ac to breathe better.

In any case, if I don't have the ac on, I get the same symptoms as when I lay down (see my other post/poll on laying down) Such as can't breathe, I get mega hot and sweat like a pig. I get all drowsy as if I'm going to drift into semi-unconciousness. I feel weak, sick and just terribly ill, heart starts pounding and racing too.

I dread to think what I'd do if I had to go anywhere such as a specialists appointment as there's no ac in the car or hospitals here.

It's almost as if my body has got used to ac and I can't turn it off in winter anymore. I used to turn if off end of Oct until March/April and now I can't and the bills are huge! Our latest electricity bill for summer was ?280 (approx $541)

Anyone else? Any tips how to go back to how I was?

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your not alone! I have a very hard time with the heat....and I live in Arizona! lol

I find the Florinef helps cause it helps me hold fluid so I don't get as dehydrated. Taking showers/baths help too. It cools me down.

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Guest dionna

my honey with NCS, HAS to have a fan to sleep or he has the soaking sweat, headache, weak, and all sorts of problems! i am usually cold with chills when i lay down so he gives me extra blankets :lol::blink: ... my body doesn't like being hot but i don't like to be as cold as he HAS to be either. all in all it works out pretty well, we have figured out the compromise. :) you definately are not alone on this one!

dionna ;)

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I don't think you are alone. When my POTS was really bad, I was extremely intolerant of heat as you describe. Thankfully I was sickest in winter. But I do remember that there was a time where if it got warmer than 78 degrees F (yikes, not sure what that is in C) I would get much worse symptoms.

Hope you can keep yourself cool as much as possible.

Katherine

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hello Tanzanite , my heart goes out to you girl , Its why I'm up again at 2 am in the morning .

I've got the same problems as you , sweating , raised temperature ( especially when I eat 101++ at times ) soaking beds, clothes , well just about everything I touch.

Things slip out of my hands they are so wet as well so I have to be very careful when carrying things .

Do your hands go bright pink and swell up to , stiffness with the swelling is down right nasty.

I have the following list of things I do;

1. Wear thin cotton or polyester/cotton kaftan's and nothing else underneath ( full length ones I might add)

2. Dont eat anything hot or foods with hot or spicy items in them.

3. drink gallons of cool fluids , not freezing cold as this can make matters worse I've found.

4. Dont drink hot cups of tea or coffee only finger warm.

5. Have loads of those menthol pads to stick to my forehead, back of neck, chest or any other place ( base of spine is a good one when laying down)

6. Have a slow running fan directed at my neck and chest when laying in bed / at the table / watching TV etc.

7. Take clonidine to help with the sweats .

8 eat loads of low calories water ice- lollies when I'm really having a bad one.

9 Dont sit in the sun or under a sun brollies , you need to be inside in a cool building at all times.

10. Try not to get stressed as this makes mine worse , whatever it is ............so what , let it go over your head , its your health you must protect , not the price of a bag of sugar or the dog weeing on the floor , get your other half to sort it.

11.Never lay flat when you cannot get breath , and also dont panic if you cannot get breath , it only makes it worse. Speak to your cardiologist and ask if you can have a bottle of oxygen , just for when you find it hard to manage at time like this, if he's an understanding man he will get one at your house in hours /days .

I know its hard , I just take everyday as it comes , every hour thats a good one is the best hour ever and every day I can get through without to much pain, sweating , falling , blackouts or just losing hope ( if you understand my meaning ) is another day when this condition has been put in its place .

Keep smiling and keep hope , I'm thinking of you .............Hey , in honour of the group and of the gem that I think is the beautifulest gem in the world I 'll name an owl after your name for my charity event 'Tanzanite' a white & cream owl , lilac chested with small flecks of purple in it ............and I'll write a short section in my sponsors lists about the DINET site and POTS :unsure: ............

Better get working or I'll be making them there owls in my sleep soon, you take care , lots of love and hugs coming your way ( by owl of course ) Ami . XXXXX

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You are not alone. My heat intolerence is 24/7. I have tried everything the others have advised. Some things help make it more tolerable but if I wind up someplace a little too warm I can go into a full blown POTS attack unless I cool off very quickly. I hate it, hate it, hate it!!!!!

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Thanks everyone. I was starting to think I was a bit weird! :unsure:

The weird thing is, when the POTS was mild (most of my life) I was always sooooo cold. I prefer being cold than hot.

Willows Thanks do much for your post. That's really nice the owl thing. :( Sometimes I do wish I had oxygen but I don't have a cardiologist. Once my endo diagnosed me that was kind of it from him. To be honest I dont have the greatest faith in him as I know for definate I was extremely low on potassium and my health was worse because of it and all he said was, there's no need to check potassium levels :lol: I improved somewhat by doing it myself, risky I know but I think I would have had a heart attack or something had I not done something about it. I feel so on my own with all this and I'm fed up with Dr's all my life saying I'm depressed or it's all in my head (even though I've seen 2 psychiatrists in the past who both said it was physical, not mental). I kind of keep myself to myself unless I absolutely have to see someone. But then I guess we all know what it's like with so many useless Dr's! I almost wish I was in the US so I could see Dr Grubb!

Amby I so don't wish to live in Arizona with this illness!! You poor thing.

What a life, eh?!

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I totally know the feeling, I live in Florida, and I'm only functional about 2 months out of the year.

My AC bill is INSANE. But when I walk into my freezing house, I feel almost instantly revived.

Hope you feel better. :unsure:

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For years my husband radiated heat even though his temperature averaged 1-1.5 degrees lower than normal and it was especially bothersome when he tried to sleep. He began sleeping in one of those "wicking" t-shirts that they sell at sporting good stores (the light airy mesh ones) and that helped to at least keep him and the bed dry. The biggest help was a "Chillow" a water filled memory foam pad that we kept in the refrigerator (stored in a clean pillow case) that he put on his pillow. To me it was very cold but to him it was comforting and once his head & neck cooled down so did the rest of him and he was able to drift off to sleep. The pads were originally made for keeping dogs cool in kennels but they now market a version for people (who cares if it works!). I originally heard about it from a website for MS suffers. www.chillow.com The company claims it cools as is but we found it necessary to keep it chilled in the refrigerator.

The best news I have is that his messed up temperature has also cleared up since using the CPAP and getting better sleep. After many years of service, the Chillow has been retired to a shelf in our linen closet - ready to serve again if needed.

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No u are not alone, i use to think i was so weird before being diag i would go to watch my sons ball game and start feelin as if i would die after 10 min or so. I hate it cause it is hot here in Alabama, and my bills are way high, and kids fuss cause its cold . But what makes it worse is i miss my sons daytime games and cant take them swimming at the beach, too much for me. I feel as if i lost out on being normal, i had to stay in the hotel when we went to six flags, and it was only 70 or so. Gosh, it stinks dont it. But I have heard that they have something for people they use it alot for ms patients, but it is something to keep u cooled off, i thought about talking with my doc about it, so maybe i can at least watch some of my sons games without having to run the ac in my gas hog!!

Good luck

Donna

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Ya! haha, I keep telling my husband that we should move. I've lived here my whole life though so I'm also scared to move. But my body CAN'T handle this AZ heat.

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No u are not alone, i use to think i was so weird before being diag i would go to watch my sons ball game and start feelin as if i would die after 10 min or so. I hate it cause it is hot here in Alabama, and my bills are way high, and kids fuss cause its cold . But what makes it worse is i miss my sons daytime games and cant take them swimming at the beach, too much for me. I feel as if i lost out on being normal, i had to stay in the hotel when we went to six flags, and it was only 70 or so. Gosh, it stinks dont it. But I have heard that they have something for people they use it alot for ms patients, but it is something to keep u cooled off, i thought about talking with my doc about it, so maybe i can at least watch some of my sons games without having to run the ac in my gas hog!!

Good luck

Donna

Do you know what the drug is?

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i'm actually wondering if the doc is referring to a cooling vest or other cooling garmets that are available & often used by MS patients....

<_< melissa

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Donna F- do you know what the name of the drug is?

Tanzanite,

I literally can not BREATHE in the heat when it gets humid and in the low 80's. I have not gone to town some summers for THREE months when it has been unusually hot as town is 25 miles away and what would I do if something happened to the car or ac? All I can guess is that my blood pooling has gotten so severe. It is very depressing. I wish I still lived in New York!

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The weird thing is, when the POTS was mild (most of my life) I was always sooooo cold. I prefer being cold than hot.

Gads ok you've got me scared. Although my POTS is chronic. I can tolerate the heat way more than the cold. Has to be over 90F before i get uncomfortable although I do notice POTS symptoms more in the heat. I feel the cold so badly I burn my legs on my heater. :blink:

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If you do a google search for cool vest you will get a lot of hits. Here are a couple of sites to check out....

http://www.stacoolvest.com/

http://www.arcticheatusa.com/

http://www.glaciertek.com/

http://www.texascoolvest.com/

http://www.coolsport.net/index2.html

I have a lot of trouble with the heat..anything about 72 and I start having major pots symptoms. I talked to my cardio about using one of the vest and he said he does not have any patients with them, but would be willing to work with me if I wanted to try them. My husband and I have been talking it over and I haven't decided yet. Not sure if I want to wear a vest all summer, but it would give me more mobility with the weather and I won't freeze the kids in the car with the ac on high. You might want to consider one.

I hope you find some relief.

Nolie

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