Car Trip

[jen201041]

Hey! I am about to go on a long car trip (6 hours one day 9 the next) for Christmas. I am riding in the car (I can't drive for more than 20 minutes without awful symptoms). I usually do okay with shorter car rides (anywhere up to 4 hours) except sometimes I get motion sickness or severe dizziness. I generally sleep through most car trips though. Does anyone have any tips on how to keep POTS symptoms to a minimum on long car trips?

[jen201041]

Thanks for your comments! Frank, I am a little jealous of the air mattress in your car. lol. Thankfully, I am 5'2 so I was able to stretch out reasonably well in the back of the car. Overall the trip went pretty well. I drank a lot (which meant lots of rest stops!) and kept my feet raised which I think helped a lot. The only thing that was really bad was elevation change. At one point in the trip we drove from an elevation of 1000 feet to 7000 feet in less than two hours. My body didn't adjust well to that and I was really lightheaded and felt like I had been drugged. Also my legs were really weak and tingly and I was having trouble swallowing. Does anybody else notice that elevation change makes their POTS worse? Thanks everybody for your ideas and hope you all had a great Christmas!

[ByteMe58]

I have to make a yearly trip to Dr. Grubb in Ohio, so we purchased a Traverse because it had enough room for me to lay down in the back after folding down 2nd and 3rd row seats (I'm 6'4"), and still small enough that my wife felt comfortable driving it.  I put an air mattress in the back, some sheets and a pillow and had a very good trip.  It's 11 hours each way and we did a 2 day round trip from Long Island.  I could not have made it crunched into a backseat or semi- reclined in the front seat.  Making short trips to the local doctor, I can recline fully and put my feet up on the dashboard.
Frank

[mtgardner]

I understand what you mean about looking healthy but not feeling up to the task at hand.  I am planning a trip too and am honestly thinking of getting something...perhaps a cane...that at least would identify me as having some disability.  It might be handy as well.  I haven't made up my mind as yet.  I wish I could carry a chair with me at the airport!  I know they have wheelchairs available but I don't need something all the time. I understand too how hard it is to make the change.  I did have a family member who made the choice in her later teens to use a wheelchair and she was suddenly able to do so much more.  It allowed her to use her energy in a more  planned way and she was able to go more places before fatigue set in.  At one point she realized how limiting life would be without one.  I think we need to recognize that point when it comes as it opens up a realm of possibilities. I know for her she was able to go places she would not have considered before.
I am not saying you are at that point just pointing out the possibilities one might afford with accommodation.  Another family member has chosen not to use one and stays at home most of the time.  The contrast is somewhat startling to me and has helped me realize I will be possibly making such choices and  I will choose to utilize tools that allow me to go out and experience more.  For sure though I think each thing that we choose comes with a bit of an emotional reaction.  I am just at the point of needing the placard for parking.  I am going to talk to my doctor this next visit and I do feel a bit emotional about it as it is a milestone of sorts.  At the same time it does represent my being adaptable and resourceful so I think I will choose to look at it in that light.  Marie  

[jen201041]

Thanks everyone for your responses! Jane, thanks for your suggestions, I am definitely planning to take over the backseat of the car so I can lay down for most of the trip. Marie, thanks for the tips. I have a placard, but I have a hard time making myself use it even if it means getting sick from walking too far. I am trying to do better and use when I have to walk very far so I don't wind up getting sick from walking. It can be so frustrating being a healthy looking 21 year old. I definitely get a lot of dirty looks when I use my placard, so I am a little scared to use a wheelchair or scooter anywhere though it would definitely be helpful at times. Thanks so much for your advice!!

[mtgardner]

Try to elevate your feet so there is less pooling while in the car.....Drink water and have plenty right at hand.  Have a placard if needed so you can park near restrooms and not have to walk so far.  Have any devices needed for ambulation with you whether it be a walker, a cane or a folding wheelchair.  It is better to conserve energy where you can so if a wheelchair allows your to do more then consider using one especially if the trip might be more enjoyable if one is used.  You may be able to participate in more that way without becoming so fatigued. I think sometimes things like that are utilized less then they could be because we wait until we have to have them instead of using them as tools to prevent fatigue.  As for car sickenss we always gave our children Dramamine and there are other meds available to take before leaving so you don't get car sick.  Maybe call your doctor ahead of time and get suggestions.  I hope your have a wonderful time and a wonderful visit!  Marie
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[DysautonomiaPrison]

The one thing that helps me is to make sure my seat can recline fully so I can be as flat as possible. But I could never last 9 hours and if I was in a car for 9 hours I would be laying down in the back seat. Hydration will also be a challenge.

Good Luck, Jane

[Bromley]

I don't have tips for POTS, but the trip sounds like fun.  15 hours from OK could land you in some pretty cool territory.  Have a nice time!!