Dysautonomia/POTS??

[mshanson3121]

Do any here have these issues, including heat triggered issues? How do you survive Disney in summer? Do any of you wear compression stockings in the heat?

 

[stsomewhere]

My daughter finds that if she wear light compression leggings (lululemon). It really helps. We like to take lots of breaks. Table service lunch and dinner to get her out of the heat. At Epcot- she is fine with counter service. SHe likes to eat at Sunshine seasons-inside the land pavilion. Her worst park is Hollywood studios. Very hot. I did get her to use a wheelchair a few days but she fights it. Just take it at a slower pace, enjoy the little things.. Some of the rides that bother her are tower of Terror, Rockin roller coaster, Everest and Sling Dog. Drink lots of fluids and eat lots of snacks.

ETA: My daughter has a difficult time in the morning, we usually try to get to the parks about 11:30.


Just thought of something else, my daughter hates spinning rides. don't know how she would react to them.

 

[jkbd03]

9 year old has POTS along with various other medical conditions. We go every year in the Summer. We take lots of breaks, hydrate before leaving to go to parks and she wears a hydration backpack, has a cooling towel and a mist fan. We rented a stroller last year from the parks for her, but this year she is just too big/tall so I am actually in the process of trying to find an alternative for her.

Hollywood Studios was our worst park as there is very little indoor relief/shade. Epcot we did the World Showcase in the evening when the sun was not so intense. We found that we could get away with going from about 9:30-12, have an indoor lunch then head back to resort for rest and pool time. Then we would eat dinner at the resort (around 5) and head back to parks until whenever we were done.

 

[kylieh]

9 year old has POTS along with various other medical conditions. We go every year in the Summer. We take lots of breaks, hydrate before leaving to go to parks and she wears a hydration backpack, has a cooling towel and a mist fan. We rented a stroller last year from the parks for her, but this year she is just too big/tall so I am actually in the process of trying to find an alternative for her.

Our DD16 uses a wheelchair for Disney - we've had for each trip for her since she was 8. Not an issue at all.

 

[stsomewhere]

an umbrella is handy for rain or shade.

 

[shyjade]

This will be our first trip to Disney since my daughter was diagnosed with POTS, lupus, and a handful of other autoimmune and autonomic disorders. She does not tolerate the heat well (doesn't sweat), and walking or standing for any real length of time can be quite painful. She is having testing done after we return from our trip and as a result, must go off several of her meds before we leave for Disney. I am seriously considering renting her a scooter to use. Thoughts?

 

[gap2368]

This will be our first trip to Disney since my daughter was diagnosed with POTS, lupus, and a handful of other autoimmune and autonomic disorders. She does not tolerate the heat well (doesn't sweat), and walking or standing for any real length of time can be quite painful. She is having testing done after we return from our trip and as a result, must go off several of her meds before we leave for Disney. I am seriously considering renting her a scooter to use. Thoughts?

If she is older then 18 then I would get her an ECV

 

[kaytieeldr]

an umbrella is handy for rain or shade.

Umbrella hat is probaly safer for everyone, and is hands-free. https://www.amazon.com/dp/B076KRCKVB/ref=twister_B076KS2JQ1?th=1&psc=1

 

[jenniy122]

Hydrate hydrate hydrate, but be sure to balance all the liquids with salt! Cooling cloths, misting bottle/fan, and a neck fan are must haves. Whenever y'all take a break or stop to eat put your feet up. I can't tolerate compression wear in the extreme heat but I do notice a difference when I can wear stockings and sleeves.

 

[Tempty]

Dysautonomia/vasovagal syncope/ulcerative colitis sufferer here
Take frequent breaks, try to always have a cooling towel/cold bottle of water/fan/etc on hand, eat salty snacks
Also try to keep meals/snacks close to what they are at home, as a sudden swift change in diet can be a trigger for some people with dysautonomia/POTS
Also try Liquid IV drinks, they're a lifesaver
I'm stubborn about using things that help me too (wheelchair, ECV, etc) so I get it
It's hard for us to admit sometimes we need help and just want to feel normal, but know you have options and you have a voice to say you need a break sometimes, it's okay! Solidarity <3

 

[Leota]

I use a cooling vest by Hyperkewl that I got on Amazon. It works via evaporation - which works enough for me as long as I am careful to listen to my body. They make higher levels of cooling like ones that hold blue ice packs etc... I also make sure I have a super insulated bottle to carry ICE water in. Also, not sure if her Dr. discussed electrolytes? Mine suggests alternating a bottle of water with a bottle of electrolytes (I use Nuun tablets) They seem to help my symptoms a bit. Personally, I can't do the Parks without an ECV or chair anymore.
Oh - the other thing I almost forgot - shoes that keep your feet cool. Not sure if this is an extra issue for me because of the erythromalagia... but that was actually one of my earliest symptoms - overheating feet leading to me feeling sick....
It is so hard to slow yourself down when you are in the midst of the Magic. I had to learn a new "normal" way of touring. I was worried it wouldn't be as much fun - but it turned out to be fantastic in a whole new way. I have met & talked to some wonderful guests & amazing cast members. I have found cool little hidden treasures that I missed for many trips that I was speed walking attraction to attraction.
Also - First Aid is Amazing!!!! I used to have to do an injection drug a few times a day that needed to stay cold. I used First Aid to store & self-administer. I discovered it to be a fantastic resource for me when any of my super icky symptoms sets in. Great place to cool off & hydrate.
Good Luck - Stay Cool - Enjoy!!!

 

[Mrs. Supreme Commander]

?

 

[happymommy]

My youngest has POTS too. He uses a roll in shower (housekeeping’s shower seats sometimes won’t even fit in a regular tub shower). We use a wheelchair at Disney (he’s also got EDS and very painful joints). Take it slow, eat enough salt and drink a lot.

 

[shyjade]

My daughter did well last week at Disney by staying hydrated, increased salt, cooling down and taking breaks often/getting off of her feet whenever possible, and wearing compression stockings in the evenings (was too hot to wear during the day). We didn't need to rent an EVC or wheelchair, but would have if she needed it. At one point her knees turned purple from the blood pooling but a few minutes sitting with her legs propped up really helped. Finding shade by the pool at CSR was not easy, but we made it work.

 

[sarahruthtoday]

My sister has POTS and I have several issues as well. We both had ECVs on our last trip, which was in July. We had the Frogg Toggs Chilly Towels which helped SO MUCH with the heat!