Dysautonomia (Autonomic Dysfunction) Community
The Summertime List
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The Summertime List

Hello Dysautonomia Community!  I just wanted to start a list of ideas for keeping both cool, and conscious this summer.  I'm sure those are top priorities for everyone.  The summer weather can be particularly troublesome for many of us, and so I was thinking that it would be completely great if we could all share as many ideas as we could think of with one another.  I will start, but please feel free to share any idea that comes to mind.

- Pedialyte freeze pops
- Cooling vests
- PICC/PORT for saline therapy
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12 Comments Post a Comment
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Brilliant idea!  Conscious is good :)  I'll think about it and come back later.
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- Bladder backpacks that long distance runners and bikers wear

Do you know if cooling vests are ever covered by insurance?
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Thanks for bringing this up.  I am bad one for taking off with nothing and getting overheated.  Yesterday I was walking the dog and we both got overheated so I will add the obvious ... don't forget water for yourself and your dog!

I'm not familiar with a lot of things you mentioned.  Do the Pedialyte freeze pops contain salt?  My daughter has low BP and will need salt.
What is a "bladder backpack?"  Sounds like a really good idea.
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I can't remember what they're really called.  It's a soft water bottle that straps onto your back with a tube that reaches to your mouth.  Most sporting goods stores carry them.
Pedialyte pops are at the grocery.  They're like Gatorade for kids.  
Which reminds me, Gatorade is great for the summer.  I also fill water bottles and keep them in the fridge and freezer all the time.  I grab one every time I go anywhere, just in case I'm out longer than expected.
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I'm not actually sure if the cooling vests are covered by insurance, but I'll let you know if I find out they are.  I plan on purchasing one before the end of the month.  I'll ask my doctor first to see if they are somehow covered.  That's a good point.
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Pedialyte does contain sodium, and other electrolytes such as potassium.  There are drink versions, as well as freeze pops.  I prefer the freeze pops myself.  When I'm overheated, eating a couple of Pedialyte freeze pops generally helps to cool me down.
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I just wanted to point out that not all cooling vests are created equal.  There are a number of different technologies out there for cooling vests, neck wraps, etc.  

Some of them you dip in water, and they use evaporation to cool you.  They are much more effective in areas of DRY heat, but if you have high humidity, I don't think they're as effective because you're going to have less evaporation in the same amount of time (and thus less cooling).  

Cold pack vests work regardless of humidity, but require regular access to a freezer (or a steady/rotating supply of cold packs from a cooler).  This puts them at a disadvantage to evaporation vests in terms of convenience, as evaporation vests can be "re-charged" anywhere you have access to water; it doesn't even have to be cold water.  

Active cooling vests are most effective but are also most costly and leave you tethered to a power supply.  I don't know whether any of these options could be covered by insurance; by guess would be this would be most likely for patients who have demonstrated problems with actual body temperature regulation, but I'm not sure.
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881165_tn?1265988188
I picked up a "hydration backpack" from a local store today.  The maker has a website: www.outdoorproducts.com.  The removable water bladder can be put in fridge or freezer, so I'm going to try freezing it and see if I also get a cooling backpack effect.  My insurance company said there's a good chance I can get a vest covered through pre-approval, so long as my doc specifies why I can't regulate body temp.  My problem now is finding a supplier that works with the insurance.  Most of the medical supply places in town have never even heard of cooling vests.  The one that did doesn't take my insurance.  I'm brainstorming with my mom the sewing genius to make one.  I'll keep you all posted about the insurance, results of the frozen backpack experiment, and if we get a vest made up.  The active cooling vests look really cool, but man, $500!
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I currently use ice packs that I just switch out approximately every hour, so I was thinking about going with the cold pack vest for myself.  That's a good point though, there are many different types.  I'm not sure if any are more likely than others to be covered by insurance.
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I bring a fan attached to a spray bottle with me everywhere I go, along with a cold water bottle.  Both of those help a lot!  Also make sure to call ahead to see about air conditioning everywhere!
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Argh!  We went to a restaurant today where I swear they must have had the thermostat set on 55 or 60; the AC was making it positively Arctic in there!  Just a reminder to anyone like myself who struggles with any sort of symptoms when going from heat outdoors to extreme cold like that, or just doesn't tolerate that kind of bone-chilling cold well:  don't forget to pack a sweater along with your heat survival kit when you're out and about in the summer.  It seems silly to be lugging around sweaters when it's 80 or more outside, but you may need it if you get overwhelmed by overzealous AC.
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Well, my medical insurance won't be covering my cooling vest, but I'm going to be purchasing one over the Internet this weekend nonetheless.
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