epilepsy at wdw

[susie2]

hi, i have just been diagnosed with epilepsy, has any one else with condition been to wdw, if so did they encounter any problems, i have been three times before so it is not a new experience, but not with epilepsy, i do not have light sensory epilepsy so lights dont bother me, but this is all very new to me at the moment and just wondered if any one had had any problems whilst there(rides to aviod ect), thanks for any help susie

 

[SueM in MN]

Hi and welcome to disABILITIES.

To kind of simplify things, there are 2 factors involved in having seizures. The first is a trigger - something that starts the process of having a seizure. Some people know what their individual triggers are - lights, particularly stobe lights or lights flicking on and off at a certain frequency are common triggers. Many people don't have specific triggers or don't know what their triggers are. If you know any triggers, you could avoid rides that have them. (let us know and we can stear you away from those rides). Even the rides that have things like strobe type lights don't have them on long enough or switching frequently enough to cause a problem for most people with lights as a trigger.

The other factor is threshold - how easy it is to start a seizure. Someone with a high threshold might have infrequent seizures or it takes a lot to trigger seizures. Someone with a low threshold might have frequent seizures or it takes very little to trigger one. Some things that might lower the threshold include:
- lack of sleep or being overtired.
- change in the schedule of medication
- dehydration
- for women, fluctuating hormone levels
- having a seizure lowers the threshold needed to have more

My DD has had epilepsy for 9 years and has a fairly low threshold for seizures. She doesn't have any particular triggers that we know of and doesn't have a problem with any rides (even ones like Buzz Lightyear and The Maelstrom that have kind of pulsating, whirling lights). She does, though, have at least one seizure almost every year at WDW. It's often the day after we get there. I know she gets dehydated on the plane ride and if we are not careful, she stays dehydrated for a while. So, my hints are to keep drinking (water, not soft drinks which can actually dehydrate you more because of the sugar content), try to not get overtired (try to keep a regular sleep schedule if you can), take medication on schedule and if you have a seizure in WDW, be very careful to keep hydrated, rested and on schedule to avoid having more.
When my DD has had a seizure, she sometimes wants to lie down and sleep for a while. There is a First Aid station in each part. They have dimly lit, quiet individual cubicles where you can rest and the staff is very nice.
Make sure that other in your party know what to do in case of a seizure (basically prevent you from falling and possibly hurting yourself). If you don't already have a Medic Alert necklace or bracelet , it would be a good idea to get one before you go to WDW. Here's a link to the Epilepsy Foundation , which has a good websire, including a page of first aid information , which would be great to print out so whoever is with you can refer to it if they need to.

here's some pixie dust for a great trip.

 

[susie2]

hi thank you so much for all your information, the web site you recomended was a great help, it seems at the moment hormones those wonderful things!! are playing a large part in when i have the seizures also as you mentioned lack of sleep, which was the one i really didnt think about but would probably been the main one i could try to control, as at the moment i have no control over hormones!, thank you again for your wonderful advice it all helps although at the moment it is alot to take in and they havent even started on the medication yet!! thanks susie