Managing Your Epilepsy at WDW

Epilepsy is a condition in the brain that causes an individual to have recurrent seizures. One of the most common neurological disorders, 1 in 26 people will develop epilepsy at some point in their lives. No two cases of epilepsy are exactly the same, as there are many different kinds of epilepsy and different kinds of seizures.

While there is no known cure, there are medications that can help some people reduce the frequency or severity of their seizures. There are also many ways to help manage seizures that can allow people living with epilepsy continue to do all the things they love, including travel!

We have covered the basics of planning your trip to Walt Disney World with epilepsy. Now that you’ve done all the prep work, this article will focus on managing your epilepsy while at Disney to ensure a great and memorable trip!

I once again spoke with Russ Derry, Director of Education at the Epilepsy Foundation of Michigan, for his input and advice. For further reading, check out the Epilepsy Foundation’s website for information and resources regarding travel.

Please note that this article does not constitute medical advice and you should always consult with your physician before making any decisions.

Sticking to a Routine

One of the most important things for people living with epilepsy is to try to stick to a daily routine. This can help in avoiding seizure triggers and overall living a healthy lifestyle. Although it is more challenging, Russ suggests that it is just as important, if not more so, to stick to a routine while on vacation.

Medication

It is imperative to stick to your regular medication schedule while on vacation. Russ said to keep in mind that you may be switching time zones and need to adjust your medication times accordingly. Set an alarm on your watch or phone to make sure you don’t miss any doses, especially if you need to take them during the day while at the parks.

Sleep

Though you may want to get up extra early or stay up extra late while at Disney, you should try to stick to a relatively normal sleep schedule, and get about the same amount of sleep as you normally do. Russ did say you can shift your sleep schedule, “a little bit one way or the other, but in general you don’t want to make any drastic changes.”

Diet

You should also try to maintain something close to your regular diet while on vacation. Russ advised, “you can still have ice cream and treats, but don’t go crazy with junk food.” Disney has many healthy and affordable options available, and you are also allowed to bring your own food into the parks.

Just as important as what you eat, though, is when and how often you eat. Russ encouraged people to make sure they don’t go long stretches without food. You will be walking a lot in the sun and heat, and you want to avoid low blood sugar, which can be a seizure trigger.

Avoiding Seizure Triggers

There are certain things, called triggers, which can increase the likelihood of someone having a seizure. As every case of epilepsy is different, different triggers will affect people in different ways. It is important to know and recognize what your seizure triggers are, so you can try to avoid them as much as possible.

Below are recommendations for avoiding the top 3 most common seizure triggers (stress, missed medication, and sleep deprivation), as well as a few others you may face at Disney.

Stress

Although stress is usually thought of in a negative context, excitement is also a form of stress. Traveling and being in a different environment can cause a lot of stress for anybody, then throw in the excitement of being at Disney, and it can definitely be overwhelming.

One of the best things you can do to avoid stress at Disney is to be super prepared. Doing your research ahead of time, talking to your doctor and your traveling party, and making a touring plan are all things that can help you be less stressed once you arrive.

If you feel yourself getting stressed while at the theme parks, try to take a break in a cool and calm place until you feel settled again.

Missed Medication

Skipping a dose or taking it late can be a trigger for seizures. That is why it is so important to stick to your medication schedule despite time zone changes and other schedule disruptions. Again, make sure to set alarms and bring your medication with you, if needed.

Sleep Deprivation/Fatigue

Russ explained that the excitement of your trip and sleeping in a different place can make it difficult to get good, quality sleep while at Disney. Sleep deprivation, especially multiple days in a row, is risky.

Use our Room Finder tool to help you find the quietest rooms at the Disney resort hotels. Also make sure to bring any sleeping aids you normally use like a sound machine, ear plugs, or weighted blanket.

You will also likely get very fatigued walking around the theme parks all day in the sun and heat. Consider planning in afternoon breaks to return to your hotel to rest, or take regular breaks sitting in the shade or air conditioning with a cool drink while you are in the parks.

Heat

With certain epilepsy syndromes, overheating is a common seizure trigger, Russ said. With these types of epilepsy, you’ll want to wear a cooling vest while at Disney.

Additionally, he said, some seizure medications can limit one’s ability to sweat, which is the body’s natural cooling system. For others, the heat may just cause extra stress. For these cases, Russ recommends using a spray fan or cooling towel, taking frequent breaks, and staying hydrated.

Dehydration

As just mentioned, dehydration can be a seizure trigger as well. With the heat and humidity in Florida, you need to make sure you are drinking a lot of water throughout the day.

Bring a refillable water bottle to save money (and the environment). There are drinking fountains and water bottle filling stations throughout the parks. Every restaurant, including counter service locations, will also give you ice water for free if you ask.

Visual Stimuli

The sheer amount of visual stimuli at Disney can be overwhelming to some people, with so much going on all around you. As this can be a seizure trigger, it is something you will want to be aware of. While it is challenging to completely escape the crowd and stimuli at Disney, here are some ideas for quiet places you can go to recharge.

Photosensitivity

According to Russ, only about 3-5% of people with epilepsy have photosensitive epilepsy, but if flashing or flickering lights do affect you, you’ll want to do your best to avoid that trigger.

If you click on any attraction on the Disney website, you can read the safety and accessibility policies and warnings for that ride or show. This information should also be posted at the entrance to every attraction. You may also need to avoid visiting the parks at night due to the bright lights and fireworks.

If You Have a Seizure

No matter how much you prepare, stick to your routine, and try to avoid triggers, you may still experience a seizure while at WDW. If this does happen, here are some tips for handling it:

Aura

Some people with epilepsy experience auras, or warning signs that a seizure is about to happen. If you have an aura while at Disney, try your best to warn the other members of your party and get to a safe place. You may also want to alert a near-by Cast Member so they can quickly call for medical attention, if necessary.

If you don’t have time to get to a cool, quiet place, such as a shady bench or an indoor lobby, try to at least sit down wherever you are, to avoid falling injuries.

Seizure First Aid

It is so important for the people you are traveling with to know basic seizure first aid so they can help if you do have a seizure.

The most important parts of all seizure first aid are Stay, Safe, and Side:

• Stay with the person and start timing the seizure
• Keep the person safe and away from harm
• Turn the person on their side, and keep them as comfortable as possible

Depending on your type of seizures, there may be more specific seizure first aid for your traveling group to be aware of. They’ll need to know what your seizures normally look like and how long they normally last, as well as when a seizure does constitute an emergency that needs medical attention.

Make sure your Seizure Action Plan is up-to-date, you have discussed it with everyone you are traveling with, and that they all have a copy of the plan with them at all times.

Crowd Control

According to Russ, another important consideration if you do have a seizure at Disney is, “explaining to bystanders what is happening because it will be very crowded.” He said you want to “try to avoid situations where people will panic or call 911.” Often, a seizure is not a medical emergency, so calling 911 can be both expensive and unnecessary.

To avoid this, Russ recommends having someone with you calmly and loudly announce what is happening and that it is being handled, repeating this until the seizure has ended. You may also want to alert a Cast Member in the area to the situation, both so that they can be ready to call for medical help if needed, but also to help with crowd control and keeping people moving.

Recovery

Once a seizure has ended, there is typically a recovery period where the individual is very tired. This may last anywhere from 15 minutes to a few hours. If you know your recovery normally takes several hours, you may want to return to your hotel to rest.

However, if your recovery period is not normally very long, you may not want to take the time to leave the parks. In this case, Russ said you should plan ahead and make note of some places on the park map that would be good recovery areas. You’ll want it to be a cool, quiet, calm place where you can sit or lay down. Each park does have a First Aid station that may be a good option, or you may be able to find a quiet lobby or restaurant seating area.

Traveling with epilepsy brings its own unique challenges, but there are many ways you can work to manage your epilepsy while at Walt Disney World. Good preparation and planning, as well as knowing what to expect and what to avoid, can go a long way to helping you have a happy and healthy vacation at the most magical place on earth.

We hope these articles will give you a good place to start when planning your trip to WDW. Thank you again to Russ Derry and the whole team at the Epilepsy Foundation of Michigan for their input and assistance!

 

Have you or anyone you know with epilepsy traveled to Disney? Let us know in the comments how your experience was and if you have any additional advice.