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friday7

Heat Intolerance- Need Help!!!

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first i apologise for my typing. my keyboard isn't working, so im typing this on the onscreen keyboard its not easy.

anyway,

i have a very hard time with the heat in the summer. i know thats not uncommon with pots. i currently have no central air conditioning system. it broke, we can't afford to have it fixed, and in our community they wont allow us to put window air conditioners in. i am very scared about the coming summer.

we can get help getting it fixed however, but i need a doctors note stating that its medically necessary for my condition. i already called the doctors and had a nurse tell me shes looked it up and said its uncomfortable, she knows, but not medically necessary. so all of you that deal with getting sick from the heat know how frustrating it is to have someone tell you that.

i know theres lots of places on the web that say ,heat is bad for pots but i'm not just looking for someones blog,etc. im looking for official proof to help make these people understand this is not just an issue of comfort. are there any studies done on this subject? any medical sites, anything from dr bell stating that heat intolerance is common with pots. I really need something i can print out from a trustworthy site. i know they have some info on that here in the 'what hurts' section. but id like more than one site.

im so mad right now. once again, lack of knowledge on other peoples part has left me feeling misunderstood and guilty for wanting help.

any help appreciated.

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That is so frustrating! I hope you get to speak to a different nurse who will listen sensibly and care about you. I looked up some articles that mention POTS and heat intolerance, I don't know if any of them are what you're looking for, but I will try and post them.

http://redlilyfoundation.org/wp-content/uploads/2012/04/orthostatic_intolerance_dr_Rowe.pdf This one from John Hopkins mentions on page 8 under 'Physical Therapy and Exercise' that extreme heat will worsen POTS.

http://www.ndrf.org/PDF%20Files/disorders.PDF This one is written by Dr Grubb and Dr Karas. And it mentions POTS and heat during the last paragraph of page 10 and also on page 15 under 'Potential Treatments' it talks about the need to avoid heat.

http://www.ndrf.org/PDF%20Files/disorders.PDF And this one lists heat as one of the things to avoid, under 'Drugs to Avoid'

I hope some of these help, and hope that you can get it all sorted out. I can't believe that nurse was so dismissive, I wonder how she'd feel about it if she had to live in the heat with POTS!!!

Best Wishes,

Lyla

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I wear a vest with ice packs when the heat is bad here in Florida. Heat can cause me to get seriously ill. I also have bed linens that don't absorb body heat, so I am not suffering as much at night. My heart goes out to you....it is serious for us to deal with heat. I really hope they take this seriously.

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Thank you so much everyone!

I told them i wanted to talk with my doctor directly. She called back and wrote me a letter, no problem. So i feel so much better now. now hopefully ill get help with my air. the woman i talked to first obviously didn't know anything about pots, but of course assumed she knew enough to tell me what i needed. so frustrating when you have to deal with people like that! i was so upset because someone is willing to fix our central air and it would be crazy if that were stopped because of a stupid note that i actually deserve to have.

Thanks everyone for your help and support! i really appreciate it. :)

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Plug in electric fans are great, I would really recommend one! also that way if you go out your body can adapt more easily than with air con.

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Friday7: Not sure if you can swing it, but check CraigsList for portable air conditioners. They don't work as well as regular ones, but can give you a little relief for a room or two. FWIW the twin-tube models work better than the 1-tube. They sit entirely inside your room and just have a hose that goes to a little flat panel which sits inside the window. Never had anyone complain about mine and I'm in a HoA area.

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