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Posted

Hello Everyone;

Now that summer is, well almost here, I would love to hear about some experiences and suggestions with dealing with the heat and humidity. Along with my dysautonomia I have a severe panic disorder. I have never been able to go into saunas and hot tubs are out of the question. But here in Ohio, the past few days have been in the 90's and is quite unbearable. It feels like a sauna just stepping outside. I am not sure if I am just very sensitive to the heat or if this is another obstacle with dysautonomia.

Eventhough I am a winter loving person, I used to be able to handle working in the garden or just sitting outside during the summer. I don't remember the last time I had a nice tan. Grant it, I do function much better in cooler months I seem to be getting worse with the heat. I get very depressed when I can't go to my daughter's softball games or play outside with my kids.

These past few days I have been taking salt tablets and loading up on the water and sports drinks, but I still feel so drained. When I am cool I feel pretty good but I can't stay inside the entire summer. I would appreciate any input.

Thanks for listening,

KathyP :)

Posted

Hi I just wanted to chime in, I have heat intolerance too, and I spend most of the time indooors where it is cooler,

if I do go outisde it is towards the evening, and even then I stay in the shade.

If you do have to go out in about in the heat be sure to carry bottles of water with you. Keep well hydrated!.

Drink drink drink..

try putting ice cubes in a towel and wrapping it around your neck, or ice packs.

good luck

Posted

Thank you Steph and Dizzygirl;

I plan to try the ice pack around my neck. I went outside in the evening and even soaked myself with the hose.

I have a feeling that I am going to be nocturnal this summer.

Take care,

KathyP

Posted

KathyP, check this out: http://dinet.ipbhost.com/index.php?showtop...oling+neck+wrap

These cooling neck wraps are really easy to wear and they work great--they also come in lots of colors and patterns (slightly more stylish than lumpy ice cubes--which also work-I've done it! Even just a damp bandana around the neck makes a difference.)

BTW, there have been several conversations on this topic in the last year or so, so you might want to do some surfing to read suggestions from former forum members.

stay cool,

m

:rolleyes:

Posted

I tried to fake a tan with the L'oreal spray stuff. Ya, POTS pt trying to have a normal life here! Oh man! What a big mistake! All that I can say is thank goodness for medical hose to cover up the tragedy and I am no more for the tan experimentation. Other than that, I have nothing to contribute to your question. Just that if you try and attempt the tanning stuff, remember that you have to stand to do it and blood does not get to the part of your brain that reminds you to make it even or comprehend the directions or anything and then you can't sit down until it dries. I just hope it all fades before I go to Mayo or they'll try and treat me for a whole other neurological disorder!!! :)

Posted

Hi Kit

You are so funny!!! I have tried that spray tan stuff before I was diagnosed. It did work pretty well, but it faded too fast. I have reserved myself to the fact that I can't tan like I used too. So I figured that I am better off without a sunburn to add to my discomfort.

Anyway, THANKS for you kind words.

KathyP

Posted

Kathy,

I use a cooling vest and really like it. The neck band doesn't do anything to help me unfortunately but the full vest does. I think the place I bought it from was coolsports.net. They are pricey but without it, I would never go outdoors for any length of time so over the long run, I think they are worth it. You can get the vest with velcro or a zipper -- get the zipper! I got the velcro one at first and it took me 10 minutes to get strapped in so I was comfortable!!! I also got a discount because I was using it for a medical condition.

Kitsakatsa,

You made me laugh! Mayo is real big on sending everyone for a pysh evaluation so watch out...keep those legs covered!

Stay cool everyone.

Posted

I cant offer any more advise about the heat, except to stay inside in the AC as much as possible, but I can offer self tanning tips! LOL

I use Xen Tan...works really well dries quickly and actually looks real.

I cant tolerate laying and baking in the sun for a tan anymore... Not only is it unhealthy and makes us feel bad, but it is time consuming!

Hope we all beat the heat soon :-0

Posted

Hey guys! What heat? We are having snow and flooding all at the same time out here.... anyone want to come over and cool off? (hee! hee!) I've been trying that Oil of Olay Quench body lotion. It is a moisturizer with a touch of tanning lotion in it and some shimmer. Works really nice for a touch of colour. Smells like vanillia. Kit, you could try a loofah scrub if you want to work some of the colour off your legs before you go to Mayo! Might even things out for you a bit. Laura

Posted

I live in south Florida and we too are going into the most unpleasant time of year now. I am also 9 months pregnant so I think this is hands down the worst time I've ever had with the heat :huh:

I have decided that for 3 months of the year (June/July/August) I literally have to stay inside as much as I can, at least down here that's the case. I go out to play with my son a lot in the evenings when it's tolerable, and if I have to go out during the day I dress lightly and let my car cool off before I get in. I take several cooler showers each day which helps too. When my son really needs to get some energy out during the day I sit in his baby pool with him- which really helps cool off but I am still drained when we come in, just from the sun. And of course, drinking tons of fluids, especially electrolytes- I really like Emergen-C orange flavored powder, it's like a carbonated orange drink. That helps with my energy level a lot also. I just try to avoid things like prolonged obligations out in the sun (trips to amusement parks or zoos, outdoor events in mid afternoon, concerts, etc...) and limit my daytime trips to a few short errands. Yet I STILL feel exhausted, weak, lightheaded, and super sweaty all the time. We can only do our best...and I would definitely check out one of those cooling neck packs!!

Posted

stay well hydrated, stay dressed in loose fitting clothing that breathes, keep water with me. I've tried the personal cooling device from Sharper Image, but it didn't do anything for me at all. I'm now considering purchasing a cooling vest to keep me okay in the summer.

I park in the shade when I can, and when I can't, I have a window shade, cloth seats in my car, I cover the steering wheel with a towel. I also crack open the sun roof so the hot air can escape once I start cranking the AC when I get back in the car.

I keep my car in the garage at night, so that the sun doesn't have a chance to heat it up at in the morning before I get going to work.

At home, I keep the windows shut and the AC running day and night. Our gas and power folks have told me that it's better to keep it running during the day than have to crank it at full power upon coming home to a hot house. As such, despite running our central air 24/7, our power bills aren't as high as our neighbors who think they're saving money by turing it off all day.

(by the way, cool vests are listed in the "help yourself to..." at the top of the forum)

Nina

Guest Mary from OH
Posted

Kathy-

I live in OH too and the heat so far this year has been unbearable!! I also have an almost 6yr old daughter who is VERY active, but also has a lot of medical conditions, one of which is ..... POTS. So, neither of us tolerate heat well. And, oh yeah, my husband has vasodepressor syncope!! So, we try to go outside early in the AM or later in the PM. We stay in the air otherwise. I try to do "active" things with her in the house with the A/C on. We'll go to the zoo early on several days since we have a yearly pass and that kind of thing. We take COLD drinks with us everywhere.

Where in OH do you live? We live near Columbus.

Hope you survive summer!! :huh:

Posted

Hello Everyone;

Thank you so much for all your wonderful suggestions. I knew I could count on you!! I have been searching the net for the cooling vest and cooling neck wraps. I have found allot of options and will be having something on very soon.

I have a swimming pool, but it is in full sun. I wait until evening to swim if the mosquitoes don't eat me alive first. I get allot of exercise with swimming.

Mary from OH, I live in Oregon, just outside of Toledo. We really have the dramatic change of seasons here in Ohio don't we?

Ethansmom, I feel lucky after picturing you in southern Florida right now, and being 9 months pregnant. My hats off to you!!!!!

Laura, sure, I'd love to come to Canada. When I take summer vacations with my family we go anywhere north because it is much cooler during the summer. Canada has breathtaking scenery also.

Thanks again everyone!!!

KathyP :huh:

Posted

I agree with Geneva about the cool vest. I have one. The cooling neck wraps don't do a thing for me. After about 5 minutes they get warm from the heat given off by my neck. However, I do like a dishtowl with ice rolled up in it and then wet the towel and wear it around my neck in addition to the cool vest on my body. Those two things together do help. I also agree with Geneva that if you get a cool vest, get one with a zipper. Mine is white. I would definitely get a light color and not a dark one. I keep my vest in the fridge all the time, just pop it out and wear it when needed, then put it back and it is always ready.

Michigan Jan

Posted

HI,

I carry a misty-mate or a spray bottle with me everywhere and spritz myself constantly.

If I'm really warm just getting your hair wet really helps. Sometimes I just pour a bottle of water over my head. :D Feels good.

Dawn

Posted

I have to say that I just bought a Cobber cooling neck wrap. For those of you that want to get one, I got mine from Eastern Mountain Sports and saved the shipping charges over the internet.

Soaking it in regular water didn't do much. It works a little better when placed in the freezer, but not enough save me from this heat. I was able to deal with the heat a lot better last summer. I was just sitting outside and felt totally tachy and sick. My HR litterally dropped when I walked inside, though I still feel sick. I am seriously thinking of getting the cooling vest.

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