NCS/POTS and WDW

[LilIrishBlessing]

Hello all. Family and I have been to disney many times but this will be the first trip since my diagnosis and I have a few questions (even after reading the sticky).

My biggest triggers are heat (including being surrounded by a lot of people's body heat, dehydration, standing without walking and heavy lifting.

Would a DAS be able to help with this? I'm my worried about the dehydration, I'm very good at filling up my tank as my doc calls it. We have a good touring plan and are going at a cooler time of year though it's never cool enough for me. Also, would I be able to get a stroller as a wheelchair for my son since lifting him can cause me to pass out? I know it may seem crazy to think that but the thought of that happening while in a line or something is just mortifying to me. I don't want this trip to have to be all about me so I'm trying to figure out the best way for my son to have a good time and no one worrying about mama. Thanks!

 

[WantToGoNow]

My daughters both have NCS/POTS (youngest just started having problems and hasn't been to WDW since). Drink non stop, including sports drinks with a lot of sodium. My older dd does have other heart related issues and does get a DAS and rides a ECV as she can't sit/stand for long periods, she needs to be able to move which isn't possible in a confined line. If (when) she feels that she may pass out, she needs to be where it's safe to lie down as her implanted monitor shows that her heart stops briefly and being flat gets the blood flowing again. She also has problems with temperature control and the DAS allows her to hang in a shop/restaurant/etc. My dd10 has had problems all summer when she gets hot with numb hands, dizziness and discoloration of her face (purple with white around her mouth). She passed out for the first time two weeks ago at Toys R Us. Since she's too big for a stroller I will probably get her a wheelchair.

 

[LilIrishBlessing]

Thanks for the info. I was considering an ECV as well but wasn't sure which would be best as prolonged sitting is also a problem... sometimes I feel like I can't win with this. Sorry about your daughters but that info was really helpful!

 

[WantToGoNow]

Will there be another adult along? When my dd needs to walk, I drive the ECV - gives me a break too. You could also drive between attractions, park and walk through the FP+ lines with your FP+, DAS or WC return times.

 

[LockShockBarrel]

Would I be correct in thinking NCS is neurocardiogenic syncope? What is POTS?

 

[Jenheartsdisney]

POTS = postural orthostatic tachycardia syndrome

I've had a few syncopal episodes at Disney - don't think they'd qualify for DAS as you don't actually stand still in many lines - I'd ask but expect to be recommended a wheelchair.

First aid have little bottles of Gatorade if you run short. When I go I take a slow release salt capsule in the morning and drink and drink and drink alternating between water and electrolyte drinks.

 

[LockShockBarrel]

I have neurocardiogenic syncope. I get triggered by standing still and heat but I don't tend to have many issues in Disney. Typically by adjusting my circumstances like shifting my weight on my feet or leaning against a wall I can stave off an episode.

The other night I had a really bad episode, the first in like a good year and a half. It came out of nowhere and I was down for about 20 minutes, but I think it was partly because my friend's didn't know to let me lay down completely and had me half sitting up.

Unfortunately there's just not much you can do for it at Disney, either you get the wheelchair and ECV and sit when you need it or you don't. DAS will still find you standing when you go back through the FP line.