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Need Opinions Please-----how Are You With The Sun?


Maxine
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Today I drove to the other side of town to help a friend with some advice before her home owners insurance agent got there. I don't drive the freeway anymore because of my health problems. The drive took about 35 minutes on the city streets. I was Ok driving there.

When I got there I was not doing too bad. I was having a pretty good day (fatigue and POTS wise), but noticed some pretty sudden leg weakness going up and down a small staircase of about 5 steps.---- :o I stayed for about two hours, and I was able to change my body position by leaning back on her couch to take the weight of my head off my back and neck, and help with the OI from the POTS. When I left she wanted to show me her garden. It was a small garden, and it only took about 5 minutes. The temp. was about 89 degrees today. When I got to my car it was extremely hot, so I started my car to let the AC get going full blast, and put my dog in her safty harness--(took my doggie with me). I instantly felt my head cooking, and the sudden weakness kicked in.

I thought , I'll be OK once the AC gets the car cooled down. NOT-- :)

I felt disoriented, my belly started to bloat way out, my OI kicked in, I was very weak, and felt on the verge of collapse. The pain in my spine was relentless, and spread into my chest, shoulders and arms. I called my Dad on the Cell Phone, and I asked him to talk with me because I felt like I was going to collapse. He told me my speech was slurring. I felt like I was going to paralize also----I just thought I was going to lock up.

Does anyone else get affected this quickly from 5 minutes in the heat? The sun light seems to kick the symptoms in more quickly, and the hotter it is, the more quickly I fade. My handicapped sign has never been so helpful, because if I walk more then 50 feet on an 80 degree sunny day then I may as well turn around and go back home. I struggle to walk from the front of a store to the back in the AC or normal temperatures, so if you add walkng too far to get into the store, forget it. The other day I went to Target to buy some socks for my husband. I struggled as the men's department is in the back of the store. It's not always like this, but I can't help being surprised when it is. You would think I would know my limitations better by now.

It must be the combination of my illnesses----------------or I have something else going on.

Maxine :0)

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Hi Maxine,

I have the same problem. I have about 2 minutes to get in and out of the heat without passing out. When I do pass out I don't wake up until someone takes me out of there and bring me out in the A#C. I can't even go on my own back yard alone when it get above 80 F. I always carry my cell phone on me.

The heat is one thing but when the sun is there it goes even faster. I don't know why.

I need to cool off the car before getting in also.

Take care.

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i have problems going in the sun too maxine...there are days that if i hae to go out in the heat that i get instantaniously sick..

i try when at all possible to not go outside on really hot days.. and for me i do not go out in the heat if the temp is over 65...i do not tolerate it much warner then that...I know its not always possible to do this...but after too many times of vomitting and spending the next day or 2 on the potty.. going out after 8am is like out of the question most days...

I dont know how fesable this is for you to do But coudl you go out afte the sun goes down? and if ou have to go out during the day.. can somebody go with you.. drop you at the door.park.. then picknyou up at the door make sure the air is running in ur car? and also maybe try and figure up to what temps outside that you can tolerate in the heat?

your not alone girly... I have virtually not tolerance at all for going out in yucky hot humid weather...Im a house hermit most yr round..except for the month of september! I normall feel well that time of yr.. rest of the yr its too hot to too cold for my dysfunctional potsy darie-air

hope ur feelin' better love and hugs

dizz

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Yes, I do, and yes it could be just POTS and nothing more...at least it is for me. Stairs always provoke me feeling terrible; Sun + heat for more than just a few minutes make me dizzy, nauseated, feeling like I'm going to drop, greying out--especially in the car before it cools off. If I know I have to park outdoors, I bring my cooling vest b/c I don't want to pass out in my car.

Nina

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I too have the same issues, thats why I only drive within 5 to 10 minutes of my house. The scary part is you never know when its going to hit you...

Be safe

((Hugs))

Sue

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Hi Maxine,

I'm sorry to hear that you're having such difficulty with the heat and the sun. You're not alone. It's a struggle for a lot of us. I think our autonomic nervous systems just can't keep up with the temperature changes.

I, too, have difficulty with the heat and the sun. Temperatures above 73 degrees make my symptoms flare up. I cannot stay in the sun unless it is cooler than 60 degrees. It's just too hot for me.

I'm having great difficulty now that summer has hit in full force. I can no longer go out for brief errands with my husband. When we've gone out in the past he has done all of the driving and I don't walk at all in the heat (Will pushes me in my wheelchair). But now that it is summer just that little bit of time transferring to/from the car is too much heat for me to tolerate. It wipes me of all of my energy for the rest of the day and the next day too.

Our plan at this point is to go out only in the evening if we have to do errands. It stays hot here at night, but at least then I won't be in the sun. Of course sometimes you don't have a choice about going out during the day (like for a doctors appointment). I'm also going to be purchasing a cooling vest. I've been putting it off because they are so expensive, but I'm paying the price physically. So I've decided I've just got to get one anyway. I'm beyond the point where it is medically necessary. An additional help - sometimes Will has started the van and let it cool down before I get in and we leave. Some people would say that's a waste of gas, but it helps me tremendously and so I think it's worth it.

I hope you can find a solution to help with the heat, the sun, and driving.

Here's to winter returning quickly!

Rachel

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Thanks for the replies--- :(

Yesterday I had an appointment with an orthopedist from Cincinnati Children's Hospital regarding my upper spine instability---cervical/cranial instability, and asked him if this instability had anything to do with my sensitivity to heat.

He was such a nice person, and he looked at all my films, and said I definately have instability--------(the EDS is the cause), However, I was born with some pretty serious congenital cervical spine stenosis to begin with. He said the pannus growth on my odontoid bone covering the c-2 vertebrae confirms the instability.

He said the ANS dysfunction is what caused the problems with the heat, and also the cold. He said we have a very limited range of what temperature we can handle.

Maxine :0)

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I definitely am intolerant to heat. To quote my doc, "If you go out into the heat, you are gonna wilt like a flower, so don't do it." My dysautonomia doc has told me to drink at least 94 oz. of water or water substitute a day, and stay indoors from 12:00 to 5:00, to avoid the hottest part of the day. Ummm...that is pretty much the whole day, so sometimes I have to forego that advice and go out anyway. Today was one of those days. I had to pay bills, go grocery shopping, etc. and didn't leave the house until 11:00 AM. It was already around 90 deg. F. By the time I got to the grocery store I was weak and out of breath. I cut my visit short and drove home, but now I am completely wiped out, and am just sitting in my air conditioned living room drinking Propel nonstop, and I am so sleepy.

If I do get stuck out in the heat for any length of time, I get very similar symptoms. I get short of breath, weak, light headed, spacey, and can't concentrate. I have had several instances where I have had to pull over and have someone come pick me up because of the heat. I don't sweat either, so I feel like I'm stuck in an oven during the summer months.

So, yeah, I can relate to your situation. It stinks, doesn't it? I have a 7 year old daughter that is always wanting to go swimming, camping, or participate in other outdoor sports and activities, and I feel bad that most of the time the answer is "no". At least, it is when it is this hot.

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I love my cool vest and never go out without it, in daylight at least. I carry a small cooler bag with freezer blocks and pop the vest in there after the car cools. When I am going somewhere with a fridge, I stick it in the freezer till I leave. It is making summer do-able, and I am in Florida.

Mine is the arcticheat one, ordered from Australia with the medical discount and including shipping--$134.

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