Vestibular Disorder

[bigmac5]

Has anyone with vestibular disorder been to Disney recently? Did you travel by plane? How did you handle rides? Any tips? I am asking fro my friend. She will be renting a scooter and we plan on going for 12 days so will not be rushing and taking a few non park days. Thanks for any help

 

[mamabunny]

I have BPPV (Benign paroxysmal positional vertigo) which - I know - is not the same, but overall, it behaves no differently at WDW than it does at home.

We tend to drive (for many reasons, not just BPPV) and our most recent trip was completed earlier this month.

Overall, my BPPV is fairly well-controlled, although if I allow it to get out of hand, then using a personal mobility device anywhere would be dangerous for me *and* for others near me. I am fortunate that (currently) I have the ability to control the worst symptoms without much outside intervention or assistance.

I am able to ride any ride I want, as long as my condition remains well-controlled. If/when it flares up, then I sit out any ride that spins or whips around too fast. Which is, of course, my favorite type of ride!

My current ride limitations are much more influenced by my recent spinal fusion surgery than my BPPV, but if your friend‘s condition is not well-controlled at the time of the trip, it may be they will want to sit out some rides, and you should probably candidly discuss whether or not they should be driving a personal mobility device if there is a chance they could hit/hurt another human.

 

[bigmac5]

mamabunny. Thank you for your response. It is good to know that Disney doesn't make your vertigo worse. Have you ever gotten on a ride feeling ok and then have a flare up? That is a big fear.

My friend would not be able to Disney without a scooter because of breathing and knee issues. We don't do real spinny rides or most roller coasters. We did love Aliens the last time we went(pre Vestibular ) but thinking she may not be able to do that this time. She uses a scooter in Costco and if she feels it coming on she just stops and sits for a few minutes, so I don't see a scooter as an issue.

 

[Firepath]

I thought the simulator rides would make it worse,but it didn't. A scooter is too wobbly for me. I used a wheelchair.

 

[mamabunny]

mamabunny. Thank you for your response. It is good to know that Disney doesn't make your vertigo worse. Have you ever gotten on a ride feeling ok and then have a flare up? That is a big fear.

My friend would not be able to Disney without a scooter because of breathing and knee issues. We don't do real spinny rides or most roller coasters. We did love Aliens the last time we went(pre Vestibular ) but thinking she may not be able to do that this time. She uses a scooter in Costco and if she feels it coming on she just stops and sits for a few minutes, so I don't see a scooter as an issue.

Generally speaking, I have not had a flare of my condition pop up while "out and about"; if I wake up and the world is spinning, I typically have to stay down until it resolves, which can take anywhere from 30 minutes to 8 hours. With careful self-management, luckily I have never lost a full day at Disney World to BPPV.

There are things I can do if I am having an "almost bad day" (which is when I have "the spins" but can still function. One of the best helpers for me is to rapidly close one eye only, and then open that eye, and close the other, basically quickly winking back and forth until the spins stop.

The more important thing I do nightly to help have a better day the next day is to insure that I lay on both my right side and my left side as equally as possible. I also try not to lay flat on my back as this will almost always cause a flare.

I have not had any of the rides at Disney World cause my condition to flare or worsen, however, I am pretty strict about shutting down any flares ASAP, even if that means going to First Aid to lie down on a cot (on each side for 15 to 30 minutes) to get things under control again. Having said that, I can't stress enough that my experiences are... my experiences. People with BPPV or similar conditions all exist along a spectrum (like any other physical condition) and what works for me may be completely useless for someone else. I will say that it my was ENT who gave me the 2 suggestions that I mentioned above, both the "rapid winking" and the "equal-time side sleeping" are suggestions they gave me, and they work quite well for me.

I'm glad to hear that she can handle a scooter successfully, and that it helps. Using every tool at your disposal is what makes the best possible Disney trip!

 

[bigmac5]

Generally speaking, I have not had a flare of my condition pop up while "out and about"; if I wake up and the world is spinning, I typically have to stay down until it resolves, which can take anywhere from 30 minutes to 8 hours. With careful self-management, luckily I have never lost a full day at Disney World to BPPV.

There are things I can do if I am having an "almost bad day" (which is when I have "the spins" but can still function. One of the best helpers for me is to rapidly close one eye only, and then open that eye, and close the other, basically quickly winking back and forth until the spins stop.

The more important thing I do nightly to help have a better day the next day is to insure that I lay on both my right side and my left side as equally as possible. I also try not to lay flat on my back as this will almost always cause a flare.

I have not had any of the rides at Disney World cause my condition to flare or worsen, however, I am pretty strict about shutting down any flares ASAP, even if that means going to First Aid to lie down on a cot (on each side for 15 to 30 minutes) to get things under control again. Having said that, I can't stress enough that my experiences are... my experiences. People with BPPV or similar conditions all exist along a spectrum (like any other physical condition) and what works for me may be completely useless for someone else. I will say that it my was ENT who gave me the 2 suggestions that I mentioned above, both the "rapid winking" and the "equal-time side sleeping" are suggestions they gave me, and they work quite well for me.

I'm glad to hear that she can handle a scooter successfully, and that it helps. Using every tool at your disposal is what makes the best possible Disney trip!

 

[Anna131517]

I have vertigo from MS and can’t ride anything that spins or roller coasters. I’m fine in the no height restriction “kiddie” rides - which works out great because I have kids who are afraid of roller coasters

 

[gillep]

I have been having vestibular issues, likely due to inflammation, for the past year, thankfully helped immensely by a vestibular PT. Everyone is going to have different experiences as the vestibular system is very complex. Flying absolutely made my issues worse when I was in the height of the symptoms, but isn't nearly as bad now. I actually was not triggered at all by rides, my issues are triggered by unfocused movement around me, so walking around the parks is much worse and triggering for me than rides where I am usually focused on something, if that makes sense. I am also really triggered by certain patterns, we stayed at The Disneyland Hotel, and I had to have my husband check us in because the wall behind the CMs was sending me spiraling. Unfortunately, it will be difficult to determine your friend's triggers until you are there. I thought for sure that rides would bother me but they did not at all, it was just the walking around the parks and certain patterns that was terrible.

 

[bigmac5]

I have been having vestibular issues, likely due to inflammation, for the past year, thankfully helped immensely by a vestibular PT. Everyone is going to have different experiences as the vestibular system is very complex. Flying absolutely made my issues worse when I was in the height of the symptoms, but isn't nearly as bad now. I actually was not triggered at all by rides, my issues are triggered by unfocused movement around me, so walking around the parks is much worse and triggering for me than rides where I am usually focused on something, if that makes sense. I am also really triggered by certain patterns, we stayed at The Disneyland Hotel, and I had to have my husband check us in because the wall behind the CMs was sending me spiraling. Unfortunately, it will be difficult to determine your friend's triggers until you are there. I thought for sure that rides would bother me but they did not at all, it was just the walking around the parks and certain patterns that was terrible.

 

[bigmac5]

Gillep, Thank you for your experience. It sounds like you are similar to her with the unfocussed movements. She will have a scooter and can stop and close her eyes for a bit.

 

[CampingFleurys]

Has anyone with vestibular disorder been to Disney recently? Did you travel by plane? How did you handle rides? Any tips? I am asking fro my friend. She will be renting a scooter and we plan on going for 12 days so will not be rushing and taking a few non park days. Thanks for any help

Has anyone with vestibular disorder been to Disney recently? Did you travel by plane? How did you handle rides? Any tips? I am asking fro my friend. She will be renting a scooter and we plan on going for 12 days so will not be rushing and taking a few non park days. Thanks for any help

Hey there. We went at the end of October for a week. 2.5 years ago I was involved in an auto accident and as a result, have TBI and Vestibular issues. Been in Vestibular Therapy for the 2.5 years and counting. Flying was rough, but when we arrived at the resort I took a couple of hours to allow the symptoms to settle down. I hadnt been to Disney in 3 years or so with the family so this trip was much different. Simply slowed everything down! Lots of breaks as Disney is a Visual challenge for the normal brain. Rides - I only rode the rides I know I could allow my body, head and Vestibular system to handle without letting myself spiral out of control. Pirates, Haunted Mansion, Frozen, Its a Small World, etc. I skipped the obvious rough rides like Space Mountain, Rockin Roller Coaster, etc. With those being said, there were many times I would close my eyes due to light change, curves and simply just too much stimulation. My system certainly paid physically for the trip but we did this for a reason before I came back before another big surgery. Prioritize, plan your days with rest as we even went back to the resort for rest including one day at the pool to slow the Vestibular system down, and then Enjoy.

 

[bigmac5]

Hey there. We went at the end of October for a week. 2.5 years ago I was involved in an auto accident and as a result, have TBI and Vestibular issues. Been in Vestibular Therapy for the 2.5 years and counting. Flying was rough, but when we arrived at the resort I took a couple of hours to allow the symptoms to settle down. I hadnt been to Disney in 3 years or so with the family so this trip was much different. Simply slowed everything down! Lots of breaks as Disney is a Visual challenge for the normal brain. Rides - I only rode the rides I know I could allow my body, head and Vestibular system to handle without letting myself spiral out of control. Pirates, Haunted Mansion, Frozen, Its a Small World, etc. I skipped the obvious rough rides like Space Mountain, Rockin Roller Coaster, etc. With those being said, there were many times I would close my eyes due to light change, curves and simply just too much stimulation. My system certainly paid physically for the trip but we did this for a reason before I came back before another big surgery. Prioritize, plan your days with rest as we even went back to the resort for rest including one day at the pool to slow the Vestibular system down, and then Enjoy.

Thank you for your input. We normally don't rush and big coasters aren't our thing. What was rough about the flight? anything you would do different?

 

[CampingFleurys]

Thank you for your input. We normally don't rush and big coasters aren't our thing. What was rough about the flight? anything you would do different?

Thank you for your input. We normally don't rush and big coasters aren't our thing. What was rough about the flight? anything you would do different?

For me it was two-fold. Pressure as a TBI patient was wicked. I used over-the-ear headphones. Vestibular wise I found myself focusing in on a movie or my phone made the flight a little easier vs trying to look around as I tend to do.

Thank you for your input. We normally don't rush and big coasters aren't our thing. What was rough about the flight? anything you would do different?