Any suggestions on how to deal with the sun

[purplefocus]

I have always been a sun lover, love the beach, pools, all amusement stuff outside. This year has been so different. I can't tolerate the sun or heat at all. Even in my house or car if I get to hot my heart start beating insanely. I get flushed and feel like I am gonna pass out. If I go out in the sun it is worse. I went to my family this pass weekend and I didn't go directly in the sun, I sat under a cabana that had a ceiling fan twirling. I watched everyone swim. After about 10 minutes I got so sick, I didn't think I would make it inside. I went in a drank alot of water and got cool and feel asleep for about 4 hours. This is horrible. I want to enjoy my family outside. Does anyone have any suggestions how to tolerate the sun for any length of time. I will accept 30 minutes. I want to take my kids to an amusement park here in Alabama but the way I am I think it would be useless. Please any suggestions.......

[ethansmom]

I feel everything you are saying, because I grew up in Florida and I am a summertime girl This is the first summer it's really bothering me, because I got sick 2 years ago in the fall, then the following summer I was pregnant and felt pretty normal. Then last year, Ethan was only a few months old, so I didn't get the chance to go out much with him being so small- but this year I wanted to go to the beach, pool, park, etc..and I just have to take it one day at a time. Luckily, it hasn't been too hot here in WV yet so I've been able to go out at least 2-3 days per week but I've found that being outside in the heat I have to not only drink tons of water AND gatorade, but also having cool water around to swim in really helps (pool, beach, front yard water hose, lol- whatever works). Last week I was babysitting for a friend and took the kids outside for about an hour to play in the inflatable pool and the hose- I just kept having them squirt me when I got too hot and they had a good time. I just can't spend more than 30-60 minutes out there.

I am also with you in the amusement park department- I haven't seen Disney World or Six Flags or anything in the last 3 years. It stinks- I would tend to save those trips for spring or fall anyhow- but I can't even fathom what a day long trip like that would do to me, as far as the walking, riding rides, fatgiue, etc...even if it weren't hot outside. Anyone have any suggestions there?

I hope we can all enjoy our summers as much as possible. I would also try to go out in the mornings and especially evenings if you just crave time outside- that's when I take Ethan out to play because I can stay out longer. Good luck and have fun this summer

[Merrill]

Boy, that sounds like a ROUGH day! Ten minutes, huh? I wonder what would have happened if you'd taken a dip in the pool and then sat in the shade? The trick, obviously, is to keep your core temperature down as much as you can, and it sounds like being in the shade wasn't enough. Being wet--especially if you dunk your head and keep your hair wet--and in the shade would be cooler than simply sitting in the shade while dry. So that's one suggestion for how to handle your next trip to a pool/beach...

I also recommend being sure to start the day well hydrated and then stay hydrated with lots of gatorade or other electrolyte drinks (and water). Salty snacks a good choice.

Do you have a cooling neck wrap yet? That would be a must for you, especially where you live! If you do a search on this site for "cooling neck wrap," you'll find links to web sites where you can order them. My April vacation in a very warm place was absolutely saved by my wearing one. You can improvise with a neck scarf soaked in cool water; it will stay wet and make you feel cooler if you coil it first before tying it (loosely) around your neck. Tying something similar around your wrists can also help.

An amusement park in Alabama in the summer sounds like it would be brutal for you--unless you get a cool shady day. Does that ever happen? Maybe wait, as Jess says, until the Fall?

I guess that's all I got for now; good luck!

Merrill

[metoo]

Hello,Dr. Fealey at the Mayo told me to take 1 to 2 coated full strength asprins a day to lower my brain set point temp.I find that it is helping some.Before I could not stand to be out in the heat for more than a few mins at a time but I can stay out longer now.Something to ask your doctor about anyway! Melanie

[ethansmom]

Oh yeah, I also find that taking Motrin (ibuprofen) helps me feel better all around- you know that drained, achy, super tired feeling you get when you've been in the sun or overexerted yourself? It really helps with that. Never tried aspirin though.

[purplefocus]

Thank you guys for all the good advice. I am gonna try the neck wrap, and I did think about getting wet but once I decided it was too late. I guess I will save the amusement park for later, Maybe on Halloween . The motrin sounds good also, haven't thought about that.

Paige

[Michelle Sawicki]

I've had people tell me the body cooling vests really help them tolerate heat. There is a link to a company that sells them on our "what helps" page.

Jessica, motrin really makes a big difference in me too. Glad to hear someone else is finding it beneficial.

Interesting info on the asprin. I'd never heard of that one.

Michelle

[opus88]

The neck wraps and wet hair/skin are really good ideas.

I went thru a few years of horrible trouble with heat, and I've always loved summer. We moved to the AL beach 9 years ago, but it hasn't always been easy. (Purplefocus - where are you in AL?)

Besides the water (drinking and on skin), wraps, etc., here are a couple of other things that helped me:

*Emergen-C powdered drink mix (Gatorade-type stuff can be really bad for us due to the high sugar content - these powders have little or no sugars).

*Switching from table salt to Celtic sea salt (the moist kind, not easy-pour stuff). You'll pay more but it's well worth it, as it retains it's minerals. Add it to everything, including a pinch in each glass of water. It won't taste salty, but will taste like soft water.

*Taking magnesium lactate. Magnesium is so important to our chemistry, and it has been suggested that everyone with POTS/dysautonomia is likely deficient in magesium. I have had the very best results from magnesium lactate.

Just some ideas . . . hope it helps someone.

[Merrill]

Opus88--couple questions... what do you mean "moist" salt, not easy pour? I'm not sure I've seen that before (tho I've purchased sea salt before--I might be getting the wrong kind). Where do you get it?

also, what form does the magnesium lactate come in? I'm not great at swallowing pills--can barely get the tylenol capsules down w/out choking... a lot of multivitamins and calcium etc are all too big. I'd like to try the magnesium` but wonder about it... Also, do you know if it's OK to take that as supplement if you don't know that your levels are low? I've had a lot of blood work in recent months, aned don't recall anyone reporting that my mag was low... Just curious; always game for trying something non-prescription!

thanks,

m

[opus88]

Hi, Merrill!

If you get a sea salt that pours just as easily as regular salt or sugar, it's overly processed and therefore missing much of the natural properties. The better grade sea salt is damp-ish, kinda like slightly moist sand. One place you can get it is http://www.celtic-seasalt.com, but there are a number of other sites & brands as well - do a web search for sea salt and see what you find.

My mag levels never showed to be a problem in any blood tests, but those tests only measure the available amount in your bloodstream, not whether your body is utilizing it properly. The magnesium lactate I swear by is from Standard Process. (It's a capsule, but you can open it into a little bit of water if you need to instead of swallowing it whole.) After only 4 days of taking the supplement I felt incredible improvement.

B6 requires mag to work, so maybe it was the B6 that finally kicked in since its helper was now available. But for whichever reason, taking the mag made me feel sooooo much better. (By the way, B6 worked wonders on my palpitations, which are now non-existent.)

If you would like to try the magnesium lactate, you can call 800-425-3115 to order it ($21/bottle of 90, lasts about a month) - and this company has free shipping. Just be sure to tell them when they answer the phone that you want to order a Standard Process product, since they will have to locate the order form.

Oh - if you get loose stools/diarrhea, it means you are getting too much. I take one pill 3 times a day, but my dad can only take 2 pills a day or he has that kind of trouble. The lactate form isn't nearly so troublesome for most people as the more commonly found citrate, which is known for creating those problems. Others I know have had good luck with other forms.

Of course, I can't promise that you will see the same results I did from the sea salt or the magnesium - everyone's body is very different - but it's a pretty cheap thing to try, especially compared to costs and side effects of prescriptions.

[Merrill]

Thanks! All very useful information!

m

[danelle]

Paige,

Thanks for asking this question. I asked a similar question about a week ago. I not only have a very rapid heart rate and shortness of breath when out in the sun but also I get extremely dizzy to the point of almost being disoriented. (and the dizziness is not always related to the increase in HR). It not only happens on hot days but cool ones as well. It seems as though the sunlight itself is too overstimulating for me. I love the sun but haven't been able to enjoy it at all over the past several yrs. Gets worse each yr. I have tried the increase in fluids and salt but there have been some other great ideas given to you here that I will try as well. DOn't know if it will help the dizziness/nausea/fatigue/etc but I am willing to try them.

Thanks to everyone for their helpful hints. Maybe I can be able to walk outside without feeling faint/drunk/etc soon

danelle

[Merrill]

Opus--another question--I was at the drugstore tonight and all the magnesium in stock was magnesium oxide. Not the lactate you mentioned, and not the citrate either. I didn't buy it b/c I wanted to check to see what you knew about this form. Think it might work? (It's on sale... )The pharmacist tried to help by looking it up for me (and suggested I try a health food store for the other form--or the internet as you said).

[opus88]

I have heard some people mention that they do ok on mag oxide, but usually the comments are relating to the fact that they don't have intestinal trouble, not whether or not they feel any better on it. I haven't heard anything one way or the other on anyone's improvement from taking oxide, so I can't really help you with that. I guess you could get just one small bottle and see how you do.

The Standard Process brand is generally not available in health food stores (unless you find a rare individual owner who is up on the best quality and licensed as some kind of practitioner). You may be able to find it at a nutrition-oriented chiropractor's office. It is a professional-grade brand which most often requires a health practitioner to purchase it.

[michiganjan]

I have a terrible problem with the sun, too. This has gone on for the last 7 years. I haven't been on a vacation in 3 years now and have no plans to go anywhere ever again! The last 3 vacations I felt like **** and was comatosed the whole time. By that I mean I could not stay awake at all. Slept in the car, slept all day and all night. Did not feel well enough to do anything. If I get too much light this is what happens, along with feeling good and sick. I spent the last family reunion in the motel room. We went to NIagra Falls. I never saw the Falls. I never left the motel room and just walking room to room was too much heat.

One thing I did that does help me some is to have the windows of my car coated with UV film at an automotive aftermarket place. In Michigan, with a letter from a doctor, you can get even the front windshield tinted lightly, the side front windows tinted darker and can go as dark as you like in the back. However, you must have a letter from a doc saying it is necessary and they keep a copy of the letter and you should carry the letter in the car in case you get stopped for having the windows darker than the legal limit.

Still, with the coated windows, I can't ride in the car very long when the sun comes in the car. Certainly not long enough to ride for an hour or any kind of trip.

I think it is a heat reaction, but that it is more than just heat. Last year our power was out in the summer and it got up to 78 in the house. I survived just fine, but cannot take 68 degrees in the sunlight. So go figure?

I use the cooling neck wrap that m referred to. I do like it. You can put one around your neck and tie one across your forehead, too. I also have the cooling vest, but haven't really used it yet. I can get sick from the sun without getting hot. Of course I get sicker if I get hot, too. I wear the wraps at the gym.

Only thing that has really worked to keep me from feeling sick is avoidence. If it is 80 degrees, I do not even set foot out the door, not even to get the mail until dark.

I was invited out to lunch this year for my birthday and it was 83 that day so I called my friend and said I didn't want to go. She went to the restaurant and picked up the food and brought it here. We had just as nice a time.

This sun problem has completely altered my life. It is by far the most difficult of all my problems to work around. It has caused me to miss so much!

Michigan Jan

[goldicedance]

Avoid the sun and the heat--that's the best advice. Stay in air conditioning! Many of us with dysfunctional autonomic systems have problems with sweating. If you can't sweat properly, you'll do miserably in the sun and heat! Besides, the sun is bad for your skin!

[michiganjan]

I agree it is best to stay out of the sun. However, my sun/heat sensitivity has made my life very limited. For example, my daughter just dropped in--she lives 4 hours away and I haven't seen her in months, but she was nearby for a wedding. I walked outside just long enough to wave at her as she pulled out, but it was long enough for the sun to make my neck feel rally awful, --stingy and burned feeling, although it is not really burned.

When she showed up I didn't even run out to the car to hug her. I had to wait till she got up to the house. I have only seen her house once a couple of years ago and probably won't go again as I can't stand riding in the car due to the sun, in spite of my spec ially coated windows and the air conditioning going full blast I still get sick even if it is only 65 degrees out.

If I could get some real help on this one, it would make my life so much more normal.

Michigan Jan

[opus88]

Jan,

Is it possible you have phytophotosensitivity that is unrelated to the POTS trouble? When you mentioned the stinging, it made me wonder.

The most common culprit to trigger this is ingestion of lime, parsley, celery, carrots and a few other things which escape me right now. It can even be triggered by outdoor plants growing in your area.

I have this problem - for me it begins with stinging then itching, and usually ends up with numerous tiny welts that itch like crazy. But I don't think the welts have to appear in order to be diagnosed with this.

You may want to do some research to see if it could be part of what's happening to you.

[purplefocus]

Hey Everyone,

I want to thank all of ya for the wonderful advice. 4th of July, I went to a gathering at my family and although I stayed inside 90% of the time, I was able to wander around outside a few times about 10 minutes straight each, long enough to snap pictures and talk a little. I use the advice of being very hydrated before going out and my husband had put a damp towel in the freezer earlier , so I put that around my neck. When I came back inside I did have a bit of heart racing and my legs felt like wet noodles but I was able to just sit down and keep socializing instead of having to go find a bedroom to lie down in. Thanks guy, I felt like a part of the family this time instead of a bystander.

Paige

[Ling]

I just wanted to warn you all to be careful in the swimming pools. My heart gives me problems if I play to long in the pool and I have to sit on the stair allot due to wanting to pass out. If you pass out in the pool alone no one is there to help you. Be careful and safe all.

I blacked out Friday night after climbing stairs. My husband was a few metres in front of me. Thank goodness I did not black out on the stairs. I did rest half way but this could have turned ugly. Now my husband and I know we climb stairs together. My butt was very sore after words. Boom on my bum. Imagine if I had a baby in my arm, scary all these stupid problems we have.

I live in Nelspruit South Africa and temperatures in summer can reach well above 36 ? C but thats not half as bad as the humidity we have. I normally run for the bathrooms because I am so nausea after a few minutes in the sun.

[Sue]

Ling,

It amazes me at how different we all our with these diseases. In the pool is where I actually feel my best, Dr. Grubb said it was something to do with our blood pressure and being under water. Of course I never swim alone and if I do someone is in the backyard with me. I would live in my pool for the summer if I could Its the only place I find freedom from my symptoms.

Sue

[nantynannie]

HI there,

This is probably going to sound very silly and maybe even stupid, but try some sun screen...I have a sun allergy/reaction that makes my skin feel like it is burning and I get red itchy bumps on my arms and face. My immunologist suggested sunscreen and I laughed (because it seemed too simple) until I tried it. It seemed to work pretty well. Also, sunscreen lowers the skin temperature by about 10 degrees which is very helpful when we are trying to avoid getting hot. This information about lowering skin temperature I learned when I was cycling and it seemed to work well for many people I cycled with.

Ann

[michiganjan]

I never knew that weearing sunscreen can lower body temperature. The neat stuff I learn here!

I always wear sunscreen on face, arms, hands, neck and the rest of me is covered by Sun Precautions clothing which is rated as a medical device for sun protection.

Still the back of my neck will sting if I am in the sun even though the back of my neck is covered in sunscreen, then the collar of the Sun shirt, then my hair, and then my Sun hat. So go figure. I can get the stinging on other places that are completely covered. Oh, and I can be in the car, too with the super coated windows (prescription from doc) and wearing the sunscreen and the clothing and still sting.

I think I have two problems. The photo problem and very sensitive to heat. They both come into play at once when I am in the sun.

I am going to research the phytophotosensitivity. Thanks for the suggestion.

Michigan Jan

[UnicornIsis]

I was just last week diagnosed as "hyper-sensitive to heat" by my NCS and POTS doctor. I am VERY fair-skinned and have always had trouble in the sun. I have never been able to tan, I burn after 10 minutes in the sun and blister up. My pediatrician when I was little suggested getting burned a few times to build up a tolerance to it and then I would be able to go in the sun okay, but it never worked. It did for my brother, but he is MUCH darker skinned now. I can't even step outside on the front pourch for more than about 5 seconds before I have to get back inside as quickly as possible so I don't pass-out. And the bad part is the 5 seconds time is literal, not exagerating. I got 2 BAD nosebleeds last weekend and went to the ER Wednesday night and Friday night for my heart racing too fast and not being able to breath. I used to be able to stand the heat enough to walk down and get the mail, but I can't even open the door to let the cat in the last 2 and 1/2 weeks. It seems to be MUCH worse in the sun, as opposed to the shade. I'm stuck inside now almost all the time. Riding in the car now is horrible because of the heat even with the AC crancked up full-blast. It used to just be bad from the movement, but this is sooo much worse. I haven't left the house except for the ER trips and to see the fireworks in the middle of a bad thunderstorm since last Monday. My doc says the AC unit isn't enough and is writing us a note to get centeral heat and air and a note for a swimming pool too. He says the heat problem is worse for females because we are naturally hotter than males. I told him a few weeks ago I was able to get in my cousins' pool and play for about an hour, but I had to keep dunking my head under the whole time and keep as much of me under the water as possible. The water wasn't cold, but it had been warmed up a bit by the sunlight all day. This was aroudn 7:00 that night. He said that is good, and I need to start doing it everyday to keep me cold enough, but we don't have pool and the YMCA they're building out here isn't open yet. I'm in the country and they just started enforcing no swimming at the boat landings on the river, so I'm out of that option too.

I read everyone else's posts and it sounded soooo much like what I'm going through now I just had to stick my 2 cents (okay closer to a dollar now ) worth in.