WDW with Epilepsy

[cariad6]

Hello! I have spent the last two days reading the pinned posts, searching the forum, and googling for hints. I'm taking my 18-year-old son to WDW in August as a combo graduation/18th birthday/yay you got into college gift.

I'm a little worried because I have epilepsy and my seizures (tonic clonic and myoclonic) are not entirely well controlled with medication. I am lucky in that I have always had a seizure aura so I know when one is coming. Additionally, the medication I take has some pretty annoying side effects. I tired very easily, have aphasia and stuttering at times, sometimes get dizzy, forget things, stuff like that. I have unmedicated ADD, OCD, and anxiety, which sometimes go hand in hand with epilepsy, as well as sensory issues-- I'm really sensitive to noise, touch, and smell (and sometimes light but not usually) and have a lot of problems with phantom smells that aren't really there.

So... I've already taken some steps to help make the trip easier. We booked a room onsite rather than off and since he's 18, he can explore the parks without me if I need to go back to the hotel. I checked in with my neurologist, have extra doses of my rescue meds, etc. I plan on writing epilepsy and my kid's cell # on my wrist with a sharpie and he knows how to administer the nose spray in case a seizure lasts more than 5 minutes.

I know about the DAS, but also recognize that I might not qualify. For me, it's not a mobility issue or a standing in heat issue. It's just this cycle of seizure meds/symptoms -->> anxiety -->> stress -->> seizure trigger -->> possible seizure. So I am planning on getting there early and speaking to someone in guest services. I know I'll have to deal with lines and crowds no matter what; for me, I feel it's a matter of lessening that time as much as I can so I can focus on staying healthy and calm and hopefully seizure-free.

But I was wondering if anyone had other advice for dealing with WDW with epilepsy. I'm going to print out the list of quiet, cool spots to rest. But I'd love to hear tips for dealing with lines if I am denied DAS as well as maybe more info about the first aid spots. If I am feeling "seizure-ish" and have to take my rescue meds, I will probably need to lie down. Would they be able to accommodate this if I felt I couldn't make it to my room?

Mostly I want my kid to have an amazing time. Thanks so much!

 

[Happiest.Haunt_999]

Hello! I have spent the last two days reading the pinned posts, searching the forum, and googling for hints. I'm taking my 18-year-old son to WDW in August as a combo graduation/18th birthday/yay you got into college gift.

I'm a little worried because I have epilepsy and my seizures (tonic clonic and myoclonic) are not entirely well controlled with medication. I am lucky in that I have always had a seizure aura so I know when one is coming. Additionally, the medication I take has some pretty annoying side effects. I tired very easily, have aphasia and stuttering at times, sometimes get dizzy, forget things, stuff like that. I have unmedicated ADD, OCD, and anxiety, which sometimes go hand in hand with epilepsy, as well as sensory issues-- I'm really sensitive to noise, touch, and smell (and sometimes light but not usually) and have a lot of problems with phantom smells that aren't really there.

So... I've already taken some steps to help make the trip easier. We booked a room onsite rather than off and since he's 18, he can explore the parks without me if I need to go back to the hotel. I checked in with my neurologist, have extra doses of my rescue meds, etc. I plan on writing epilepsy and my kid's cell # on my wrist with a sharpie and he knows how to administer the nose spray in case a seizure lasts more than 5 minutes.

I know about the DAS, but also recognize that I might not qualify. For me, it's not a mobility issue or a standing in heat issue. It's just this cycle of seizure meds/symptoms -->> anxiety -->> stress -->> seizure trigger -->> possible seizure. So I am planning on getting there early and speaking to someone in guest services. I know I'll have to deal with lines and crowds no matter what; for me, I feel it's a matter of lessening that time as much as I can so I can focus on staying healthy and calm and hopefully seizure-free.

But I was wondering if anyone had other advice for dealing with WDW with epilepsy. I'm going to print out the list of quiet, cool spots to rest. But I'd love to hear tips for dealing with lines if I am denied DAS as well as maybe more info about the first aid spots. If I am feeling "seizure-ish" and have to take my rescue meds, I will probably need to lie down. Would they be able to accommodate this if I felt I couldn't make it to my room?

Mostly I want my kid to have an amazing time. Thanks so much!

Okay, without being too specific about myself and my epilepsy, I can tell you that I am like you with phantom smells as an aura and only having rescue meds as I don't respond to other traditional anti-seizure meds.

With that said, I have been to WDW many times (30+) and it's great. You need to be careful in a few places in if you are triggered by strobe like lights etc (Pandora FOP have them for instance). I also have to be careful on Pirates of the Caribbean in MK because of the strobe light lightening effect at the start of the ride ( but that's my trigger of strobes, you may not have that).
As for having to lay down almost instantly after taking rescue meds, each Park has a care center that has a place that you can lay down and rest if you tell them your issue. Also, before I forget, I've never had to get a DAS for my trips to the Parks with my epilepsy, if you feel you need to I encourage you to try to, whatever is best for you.

If you have any further questions, feel free to send me a PM.

I wish the best trip for you both.

 

[anonymousegirl]

So if you are given a DAS, you will be able to wait in the shorter FP lines. That's it. DAS will not help with parade crowds, busy restaurants, or shops. There are very few places to sit and/or rest. I fear that even if you have some warning about an onset, that there will not be anywhere close to hand to sit or lie down. Have you thought about using a rollator to help with balance and to give you an immediate seat?

 

[cariad6]

As I stated, I'm aware that I will still have to deal with lines. And I can (somewhat) avoid parades and shops and send my kid to the counter for food if I need to. My thought is the fewer lines the better. I'm also assuming (and I haven't been to Disney since 2000, so I could be wrong) that it's a lot easier to get out of a food line than a line for a ride. And if I'm going to have a seizure, I'm going flat on the ground. Having something to sit on won't help at all. Hopefully if I can mitigate the stress and triggers as much as possible, it won't be an issue.

 

[cariad6]

Okay, without being too specific about myself and my epilepsy, I can tell you that I am like you with phantom smells as an aura and only having rescue meds as I don't respond to other traditional anti-seizure meds.

With that said, I have been to WDW many times (30+) and it's great. You need to be careful in a few places in if you are triggered by strobe like lights etc (Pandora FOP have them for instance). I also have to be careful on Pirates of the Caribbean in MK because of the strobe light lightening effect at the start of the ride ( but that's my trigger of strobes, you may not have that).
As for having to lay down almost instantly after taking rescue meds, each Park has a care center that has a place that you can lay down and rest if you tell them your issue. Also, before I forget, I've never had to get a DAS for my trips to the Parks with my epilepsy, if you feel you need to I encourage you to try to, whatever is best for you.

If you have any further questions, feel free to send me a PM.

I wish the best trip for you both.

Thank you! And that's really good to know about the care centers. I'm really hoping for an seizure-free trip, but I just want to cover my bases.

 

[Happiest.Haunt_999]

Thank you! And that's really good to know about the care centers. I'm really hoping for an seizure-free trip, but I just want to cover my bases.

You're welcome! As a fellow epileptic I know all too well that you can never be prepared enough!

 

[cariad6]

I thought of another possibly silly question-- we aren't getting the food plan, but would it be worth getting the refillable mug for the five days we'll be there? Will I be able to have it filled with ice water as well as coffee in the morning and diet soda (I'm on a keto diet, which is a big reason we're not doing the meal plan)? I know staying hydrated is also important in keeping seizures away.

 

[SueM in MN]

My youngest daughter has generalized tonic/clinic seizures that are not well controlled. She usually has between 3 and 6 per month. She's had them pretty much anywhere you can think of - on a plane, inside attractions at WDW, in lines.....
She has cerebral palsy and is always in a wheelchair because she can't walk, so at least we don't have to worry about her falling.
We have used First Aid in every park and they are great. They all have quiet, dimly lit places with cots where you can lie down to rest. When you arrive, there is a check in desk where you will be asked to sign in. It's basically just so they have a record of how many people are using their services. They will ask what you need/why you are there so that they know if you need their services and can assign an appropriate room to you.

I don't know if you've seen these posts, but post 3 and post 24 in the disABILITIES FAQs thread have information that might be helpful to you. Post 3 is general info, but has some info on epilepsy. Post 24 had information about lights (most people with epilepsy are not sensitive to lights, so most don't need to be concerned about lights).
You can find the disABILITIES FAQs thread near the top of this board or follow the link in my signature.

Since the accommodation provided by DAS is waiting outside of the regular lines, the things that are important to discuss with the CMs at Guest Relations are the things related to your disability that make waiting in the regular lines an issue for you. The My Disney Experience app will be helpful at letting you know the current wait times for attractions, which can minimize your waits in line. You can also use the 3 Fastpasses that every guest is able to arrange ahead of time. Even if DAS is issued to you, those Fastpasses are helpful.

Some general advice our daughter's Neurologist gave us, plus information I know as a nurse:
- try to take medications on your regular schedule. We actually set alarms on our phones as medication reminders.

- We have a little pill holder with several compartments and fill those with her medication doses for the day. That way, there is no question about whether medications were taken or not. If the compartment is full, the dose hasn't been taken yet.

- get enough fluid since dehydration can make seizures more likely to occur.

- getting enough sleep is important. Sleep deprivation can make more seizures more likely, so trying to stay to your usual number of hours of sleep a night is helpful.

 

[SueM in MN]

I thought of another possibly silly question-- we aren't getting the food plan, but would it be worth getting the refillable mug for the five days we'll be there? Will I be able to have it filled with ice water as well as coffee in the morning and diet soda (I'm on a keto diet, which is a big reason we're not doing the meal plan)? I know staying hydrated is also important in keeping seizures away.

not silly at all.
The refillable mugs are only for refills of drinks at your resort, so are not used for drinks at the parks.

Any guest can get ice water at any of the counter service restaurants on request - just ask. They are not likely to refill YOUR cup because they need to keep items in their kitchen clean. If you have a mug, you could pour the ice water from the restaurant cup into your mug though.

 

[Happiest.Haunt_999]

I thought of another possibly silly question-- we aren't getting the food plan, but would it be worth getting the refillable mug for the five days we'll be there? Will I be able to have it filled with ice water as well as coffee in the morning and diet soda (I'm on a keto diet, which is a big reason we're not doing the meal plan)? I know staying hydrated is also important in keeping seizures away.

I'm on a low carb diet which is similar to keep away seizures. If you want, just take a contigo or something similar to keep ice water in, you can carry it around the parks. You can also get free ice water in many CS locations in the Parks.

 

[gap2368]

I would go talk to GR about what kinds of problems you have in line, and ask them what you think you should do.

I would do things that will help you, as other have said use your 3 FP that every one gets,

there are websites that will help you make a good tour of the park, maybe one of them will help ( there are some people on the theme park bard that say they use one of theses and never wait more then 10-15 minutes in any line)

keep on you normal schedule as much as you can I tend to get very dehydrated fast as I use Contigo for water like this one https://jet.com/product/detail/6efe...&clickid=5342da1a-4b79-438d-97dd-0af031fa1942. love it as the water stays cold a long time and it is spill proof, and the lid has a cover.

as fair as sounds go can you wear ear plugs like https://www.uline.com/Product/Detai...gclid=CO2QwvzC-NQCFYEXgQodiAkHLg&gclsrc=aw.ds to help with the sound.

safari as touch is it people touching you, if so you son could help make a bubble around you he could stand right behind you and this why the people will not get right up on you, and you can just leave some space infant of you. ( some times telling the guest behind you that you need more room dose wonders)

smells I going a cotton ball in a zip lock bag with a smell I like on it ( some times I do 2 or 3 different ones) this helps so much

I know you said you did not have a problem with light normally but sunglasses, a light weight hoody or one of the cooling towels

and first aid is great in all the parks

hope this helped

 

[DisneyOma]

As I stated, I'm aware that I will still have to deal with lines. And I can (somewhat) avoid parades and shops and send my kid to the counter for food if I need to. My thought is the fewer lines the better. I'm also assuming (and I haven't been to Disney since 2000, so I could be wrong) that it's a lot easier to get out of a food line than a line for a ride. And if I'm going to have a seizure, I'm going flat on the ground. Having something to sit on won't help at all. Hopefully if I can mitigate the stress and triggers as much as possible, it won't be an issue.

The CS lines are bad - there's a register line, then you pass that and go to a counter line. Not easy to maneuver there at all. I think it's a great idea to send your son up to get food. Only issue with that is you may not be allowed to get a table until you have the food. This happens at the busy times.

I thought of another possibly silly question-- we aren't getting the food plan, but would it be worth getting the refillable mug for the five days we'll be there? Will I be able to have it filled with ice water as well as coffee in the morning and diet soda (I'm on a keto diet, which is a big reason we're not doing the meal plan)? I know staying hydrated is also important in keeping seizures away.

If you plan to spend a lot of time at the resort, yes. But they won't fill the mug for you at the parks.

 

[DisneyOma]

For scents: https://www.sharperimage.com/si/view/product/High+Performance+Personal+Air+Purifier/204198

If by phantom scent you mean a returning scent that you smelled ages ago, try swabbing the inside of your nose with vaseline. For some reason that helps when brain thinks I'm smelling something when I'm not.

 

[Happiest.Haunt_999]

For scents: https://www.sharperimage.com/si/view/product/High+Performance+Personal+Air+Purifier/204198

If by phantom scent you mean a returning scent that you smelled ages ago, try swabbing the inside of your nose with vaseline. For some reason that helps when brain thinks I'm smelling something when I'm not.

Phantom scents for epileptics is a smell that isn't there and it's usually part of an aura (at least for me) smells like burning toast, gasoline, etc...

 

[KristyBox]

My 8-year-old kiddo has epilepsy. He's never reacted to strobe lights on an EEG and I've read here (but, still, it's rumor only) that Disney doesn't use true strobes anyway.

I am keeping him rested, cool, and hydrated as much as we can, but the real reason I am asking for the disability pass is not for that stuff. It's for the anxiety/autism. He runs away if lines get overwhelming. For food, my husband or I will stand in the line.

Do you fall during seizures? He's only had drop seizures a couple of times. He owned a therapeutic stroller but we aren't bringing it because walking actually seems to keep the seizures at bay. So maybe consider whether walking is a danger and if you need a wheelchair sometimes, if you fall a lot. Probably not due to aura. (He gets aura, so we sometimes have a warning.)

 

[SueM in MN]

My 8-year-old kiddo has epilepsy. He's never reacted to strobe lights on an EEG and I've read here (but, still, it's rumor only) that Disney doesn't use true strobes anyway.

I am keeping him rested, cool, and hydrated as much as we can, but the real reason I am asking for the disability pass is not for that stuff. It's for the anxiety/autism. He runs away if lines get overwhelming. For food, my husband or I will stand in the line.

Do you fall during seizures? He's only had drop seizures a couple of times. He owned a therapeutic stroller but we aren't bringing it because walking actually seems to keep the seizures at bay. So maybe consider whether walking is a danger and if you need a wheelchair sometimes, if you fall a lot. Probably not due to aura. (He gets aura, so we sometimes have a warning.)

I can tell you that I have been on all the attractions listed with lights in the disABILITIES FAQs thread except for the new Flights of Passage, which opened after our last trip, Rock N Roller Coaster & Expedition Everest (I have not been on them, but family members have and I have watched videos of both) . So, the description of the lights on attractions are not rumor; they are as accurate of description as I am able to make.
And, if he hasn't reacted in the past to strobe lights, he's probably not sensitive to them, but you can confirm with your doctor.
The information in that post about the number who are sensitive to strobe lights, the number of light blinks pers second that is likely to cause a problem for people who are sensitive and for covering one eye if you encounter a strobe light is from the Epilepsy Foundation, which is a reputable information source about epilepsy.

 

[SueM in MN]

See also post 3 on page one of the disABILITIES FAQs thread for more information about epilepsy.
Most people think of strobe lights when they think of seizures, but most people with seizures don't have any problems with strobe lights.
This is something to talk to your doctor with, but in for most people with epilepsy, the lights at WDW won't cause any problems.

Things that are very important to be aware of are sleep deprivation, dehydration and getting off schedule with medication. All of those things can lower the seizure threshold (how easy it is for a seizure to occur). It's very easy to get off schedule or forget medication while on vacation. One things we have found that helps with this is to actually use an individual dose medication container and an alarm (on our phone or iPod) as a reminder for medication times.

There are not actually any attractions at WDW that use lights that are technically strobe lights (i.e, fast, regular flashes of light) and they do not have any warnings for seizures and/or strobe lights on any attractions. Where they do have flashing lights, they are always irregularly flashing, which is a different situation.
Most true strobe lights flash many times per second, but slowing to 5 flashes per second or less means that the majority of even photosensitive epileptics are not going to have a problem. Only about 3-7% of people with epilepsy are photosensitive and have problems with lights; of those, only about 5% would have a problem with a light flashing 5 times per second or less.

If you do encounter flashing lights and are concerned, the Epilepsy Foundation recommends covering one eye and turning/looking away from the direct source of light. The reason for covering only one eye and looking away from the direct light is to prevent both eyes from sending exactly the same information to the brain.
This should work whether someone has a problem with epilepsy or has problems with lights for another reason.

This is a list of attractions I know of with light effects of some type. Many attractions have a single light or 2, so it is difficult to list all. But, I am sure that we have included most of them.
MK

• Enchanted Tiki Room - periods of darkness with simulated lightning. The lightning is random and short.
• Pirates - some lightning flashes in the first dark part of the ride. Some random flickering from simulated flames in the last half.
• Big Thunder Mountain Rail Road - there are no light effects in this attraction, but if you are riding on a sunny day, you will go in and out of dark tunnels repeatedly at high speed.
• Splash Mountain - on a sunny day, there are several places where you will go from dimly lit indoor areas to outdoor. The ride moves slowly, so the change is slow. There is a single bright flash when your picture is taken during the big drop.
• Seven Dwarfs Mine Train - no light effects, but on a sunny day, you will be traveling in and out of dark areas into bright sunlight.
• Haunted Mansion - almost at the end of the preshow, there is a flash of lightning at the top of the ceiling. Boarding area includes flickering wall sconces.
• Small World - the end scene includes numerous ropes of white lights that blink on and off in a regular pattern. I would describe it as a traveling pattern - as one light goes off, the next light in line goes on. So, the light travels down or across the strand of lights.
• Buzz Lightyear - just before the last room of the ride, there is a long narrow tunnel room with swirling red lights and flashing white lights. The swirling and flashing are not rhythmic. The last room of the ride includes several very bright random flashes of white light.
• Stitch's Great Escape - Most of this attraction takes place in the dark, but there are some random light flashes at times (while looking for Stitch)
• Space Mountain - multiple flashing lights

Epcot

• Spaceship Earth - the first part of the ride and the last part of the ride are dark, long and narrow.
  The entrance 'tunnel' has screens high on the wall, warning that your 'time capsule' will turn and descend at some point during the ride. The screens are bright compared to the walls.
  The exit tunnel has some lighting effects, but not flashes.
• Ellen's Energy adventure - includes a movie where parts are dark and then light suddenly appears (the 'Big Bang' theory of earth's creation). Also includes a section with ‘confetti’ lights in different colors ‘falling’ from a point in the ceiling to the floor across guests.
• Mission Space - Includes a flash of light for a picture and flashing instrument lights to alert ‘astronauts’ to push particular buttons. There are also small amber colored flashing alarm beacons at the end of the ‘runway’ when you are landing on Mars.
• Test Track - the walls and ceiling in most of this attraction are black, with colored strips of light. On pictures they look like neon lights, but are probably fiberoptic lights. The lights do not move or flicker. There is one section where your car looks like it will run into a truck, which has suddenly turned its lights on. Soon after that, the car travels outside, so if the day is bright, you will go into bright sunlight.
• Living with the Land - simulated thunderstorm in the first few scenes. The first part of the attraction is dim; the second part is in a greenhouse, where the light can be a bit of a shock when you first enter. At one point, the boat enters a 'fish farm' part of the greenhouse, which has dim red lighting. After traveling thru that part, you will agin be in a greenhouse. The ride boat moves slowly though, so it is not difficult to adjust to the different lighting..
• Soarin' - There are sudden scene changes where something happens to fill the screen in the scene you are on and change to the next scene. Most are between similar light situations. One of the last scenes includes soaring over the Eiffel Tower. There is a bright searchlight which swings towards you at the start of the last scene change. The end scene includes fireworks
• Journey into Your Imagination - Some flashes of light. One bright flash near the end where a picture used to be taken.
• El Rio del Tiempo (Mexico) - fiber optic fireworks in the ceiling and wall in the last scene
• American Adventure - the Chief Joseph sequence has a few stokes of lightning. The World War 2 sequence on a ship includes arcs of welding light.

Studio

• Star Tours - flashes of light during the attraction (you are in a space ship and end up in a spaceship fight)
• Voyage of the Little Mermaid - some flashing light, some twinkling lights and some pulsating blue/green laser lights above your head to simulate the top of the water. All are random
• Rock N Roller Coaster - one bright flash of light during picture taking and random flashes of light as you 'drive' down the highway
• Tower of Terror - one bright flash of light during picture taking. Elevator door opens suddenly to give a view of outdoors (so bright light on a sunny day). Some twinkling lights during the early part of the ride and I was too busy being scared and holding DD down to notice any more.
• Great Movie Ride - there may be fire in the Western scene, depending on which variations of the ride sequence you see. There are random bright flashes of lights in the Alien scene and random flashes of simulated lightning in the Raiders of the Lost Ark and Mummy scene. The Fantasmic scene right before the Wizard of Oz has a swirling light pattern. There is a flash in the Wizard of Oz just before the witch appears.
• Frozen Sing Along - Includes some flashing lights/lights to simulate snow that moved/beamed across the stage and sometimes the audience.
  
• Fantasmic - includes some bright flashes of white lights that beam across the audience, fireworks, 'eye lights' from dragon and snake. Many people are using light up toys which may be set on rapid flashing. Glow with the show ears change color in synch with the show. Most of the color changes are slow transitions.The ear part is translucent white plastic.

AK

• Festival of the Lion King - one act includes twirling flaming sticks and there are some bright lights that beam across the theater. Most come from high and/or the ceiling, especially during the aerial act sequence. There are other random lights beaming as spotlights get into position to light different singers
• Dinosaur - dark ride with sudden appearance of dinosaurs in front of you. Random flashes of light. One big flash as a picture is taken.
• Expedition Everest - includes some bright light effects
• Flight of Passage in Pandora - has a single bright flash of light or 2 as your banshee takes off to fly and again to end the ride.

My mother had migraines and found that reflections off water (especially the World Showcase Lagoon) bothered her on a very bright day. She also had problems sometimes with the 360 movies in China and Canada because they are all around and because of flicker. Even though movie might not seem to flicker, they are actually made up of many individual pictures per minute going thru the projector. The flickering in them is noticeable by some people, especially if the film is damaged or dirty.

 

[megs1313]

Your situation sounds very similar to mine (except I decided to go on medicine for the anxiety last year) and I'll tell you what I've done:

-view ride videos on youtube before you go. this helps with the anxiety part for me...i know what i'm getting into.
-I avoid all of the attractions listed above with the exception of:
-FOTLK (I cover my eyes, because I know when it's coming)
-Frozen sing along (this has never bothered me, and i'm REALLY sensitive)
-Living with the Land (cover my eyes, i know when it's coming)
-IASW (cover my eyes)
-Mexico (cover my eyes)
-know where the first aid stations are
-identify restful places in each park (i have go to spots that are usually quiet and calm if I need to collect myself)
-plan, plan, plan: i can eliminate a lot of anxiety/stress by planning ahead almost to the minute. planning for WDW is a good idea anyway, but I take it to the next level for sure. It helps!

Also, FYI, you should avoid the T-Rex restaurant in DS, rainforest cafe at AKL, and possibly BOG in MK (though I have been to BOG and just stayed out of the west wing.)