Anyone Taken A Really Long Car Ride With Pots?

[HopeSprings]

I want to visit close family in Florida (I'm in NJ). I feel bad because I haven't been there in years - they always have to come to me. They understand... but still want me to visit. I've been saying no and basically never traveling anywhere because I don't want to feel like I do in an environment other than my home and I don't know if I'd be able to enjoy my time there like this. But it's not just about me - they want my children to visit too. I can't fly due to pressure - planes always bothered my ears and my head, but with POTS I'm sure it would be doubly bad, so we'd have to drive. My husband would do the driving, but still sitting in a car for 18 hours? I guess we'd stop somewhere overnight, but it's still 9 hours a day. I dunno - I don't want to feel trapped, like I can't ever go anywhere, but there is a certain reality I'm dealing with here. Input, thoughts, experiences.... ?

[sue1234]

I just did the 12 hour ride from Louisiana to Florida 10 days ago to go to Mayo. I don't drive, so was just a passenger. The only problem was my hip bone gets sore from so much sitting. At home I sit all day, but I am up to the bathroom or kitchen often, so the blood circulates well. But, overall I made the trip fine.

[Lemons2lemonade]

Does 9 hours count I felt bad at first, but then got over it, tried to keep my feet up.

[blueskies]

Naomi, this is a problem I have at the moment so I'll be interested in suggestions too. I used to be able to fly better than be a passenger on a long drive. Now it's the other way around. Last 2 flights were hard but I made it. When I got off the plane last time I had to sit on the ground in the airport for quite a while. I looked pretty strange but I've had to do stranger things. I have to attend my daughter's wedding in April -- and it's either a 1 and half hour flight or a 10 hour drive. Hubby will not do the drive no matter if I drive or he does. I'm going to have to grit my teeth and cross my fingers that I get through the flight okay. I swear I'd be a better flyer if I had room to put my legs up. Sitting in the normal way with legs down is very tachy, OI, brain fog inducing for me. That's why I eat semi-reclined on the lounge, mostly. My feet are always elevated when I'm sitting at home. Oh, and for some reason I hyperventilate on a plane. Not from anxiety. It just starts to happen. Not sure why?

One thing about flying that makes it a little easier is for me to get a window seat. For some reason if I can see the ground I tend to keep my balance better.

Only last night I found myself starting to dread the thought of going to my own daughters wedding.Then I just gave into it and accepted that I will be going, that I want to go, and however my body decides to respond I will deal with it at the time. Starting today I'm doing lots of meditating in the run up to going to this event. I figure if I am going to do it I am going to try and do it as calmly as possibly -- that has got to be a help!

[futurehope]

My suggestion is DO IT! I am currently sitting in a motel room with my driver (my husband) and my chihuahua after a 9 hr car ride from Orlando, FL to Wilson, NC. I still have a 5 hour leg to go to Baltimore, MD tomorrow, but I would do this again.

I prefer riding in a car to airplanes anyway, which was not always the case.

DO IT. Live your life. No matter what accommodations you need to make for your condition, do it. You will learn via trial and error what works and what does not.

Do it. This is your life. Go. You may not be a healthy specimen, but you are alive and capable of more than you know.

You cannot allow fear to be your driving force.

Why not attempt a shorter version of a trip to begin with to build up your confidence and to give you ides that will help?

Let me know what you decide.

[FarmerAmy]

I have two thoughts...you could take the train! You could even take the auto train if you want your car in FL.

But if you want to drive...I do fine in the car as long as I recline my seat and put my feet up on the dashboard. If you can't lie down in your car, maybe you could rent a larger vehicle for this trip.

[Chaos]

We've done several LONG car trips the past few years while I've been sick. One summer we drove over 7200 miles in a month. My husband and I take turns driving...as long as I can keep at least one foot up on the dashboard or do other things to keep stomach muscles working I usually do ok. On bad days, he drives. I do much better driving than flying. At least I can change positions and keep my feet up and recline the seat a bit and take breaks when needed. The one trip I did by plane I spent all the time at the final destination being sick and feeling crummy. (It was a long weekend so not a lot of time to recover in-between flights.)

I'm not willing to totally let this disorder rule my life but I do understand what you mean about having to deal with the realities of your condition. With a car trip however, I have a little more control of the things I need to make myself feel somewhat ok. I do always plan on needing awhile once I return to recover from the travel and try to build in some "rest" time on the trip to keep from making myself too much worse during the trip.

Now if I could figure out a way to drive to Italy (from New Mexico) LOL.

[CharmedLinz]

Well I was a driver, for a living, before I had to quit working. There is nothing I like better than a road trip, so this has been particularly hard.

I was the strange one growing up that wanted to be a truck driver, big rig, now my best friend has that profession and I've at least gotten to go with her a couple times.

I have been under a strict no drive for the last couple years, and I obeyed especially in town because I feel like they may as well stick a drunk behind the wheel, my eyes don't focus fast anymore so traffic distortes things.

As of last week, now my license will be turned into a NO DRIVING, and it's in my record, it's hard to swallow.

I have some interesting things to add for this topic.

When I drove for a living I always did better at night, my eyes tolerated darkness better than light, and I worked extremely long hours, sometimes 36 at a time. Unless I got dehydrated or ignored an ear infection I never had a problem.

I have never tolerated flying well, neither does my Cousin with POTS. I discovered through trial that I tolerated a small engine plane and helicopters just fine. Taking off and landing is fine as well, as long as I can feel the plane moving I'm ok, I like turbulence, weird I know.

I don't get sick as in vomiting or motion but as soon as we are up high and things are still my ears start acting up and I get dizzy, vertigo, and very light headed and limbs are hard to move.

My Father who was a pilot believes that my body reacts badly to the high altitude not the flying itself, as I seem to only have reactions when the plane is at the 30,000 foot mark or whatever the height is when you reach max elevation.

It's definitely not part of my anxiety because I'm completely calm when it happens.

To go along with this I have another weird one.

I grew up river rafting and kayaking, always on the water, moving fast water. Even on a speedboat a couple times.

In 2006 on a road trip I decided to go whale watching off the coast of Boston.

It was a freezing cold overcast day and I took my benadryl (same as dramamine basically) just to be safe.

I was fine until we got out to where we found some whales and they shut off the boat. The water was very swelly but just big rolling swells not stormy really, and we had several whales very close that were showing off and making the boat rock as well.

By this time everyone was sick, running to the bathroom. I had known better than to eat much that morning so I was ok.

All the sudden I started feeling like I do on an airplane only worse, and my legs would not work and I was chilled to the bone. I went inside and sat and one of the boat attendants came to check on me, asked if I had taken dramamine. I told her my symptoms and she called over her boss who told me....Gosh you don't have just motion sickness you have actual sea sickness.

Apparently Sea Legs isn't just a saying, it's a phenomenon that can affect some people and cause your blood pressure to not regulate and do all the other fun things we know POTS can do, until your body adjusts to the movement of the sea.

It took 12 hours after that boat ride for me to stop shaking. I got no pics of the whales, I just stayed inside with my head down and legs up. I think it just confused my autonomic system more than it already was and my body couldn't figure out what to do. They had to help me walk off the boat.

Had I known then about my POTS what I know now, I would have loved to know what my HR and BP were doing, and my temperature.

I still do ok in a car but not like I used to. In 2010 we made the trip to Alabama from NM to see Dr. Watkins and we did it really fast, whole trip in 6 days, it was really tough.

This year, we did it in 18 days. I could only stand about 6 hours in the car at a time.

Plus things get so weird to me in a car especially in traffic that my adrenals can't take the major freeways especially with my Mom driving, she's a bit of a nervous driver when she's in an area she doesn't know.

So we took all secondary highways. Took longer, but was very pleasant and we got to see more.

I would say to just plan and take as long as you can to get there, enjoy yourself, don't tax yourself. If you starting feeling icky lay down or stop for a break before you get really bad.

We are driving to Phoenix next week, 8 or so hours, which will be rough. I plan on starting the trip with good meds and laying down trying to sleep as long of the trip as possible.

Oh yeah and suck on candied ginger. Try to have fun.

[kalamazoo]

I drove from Arizona to Alaska. Took a week and aggravated my symptoms. I made sure I got out of the car at least every two hours. Stayed hydrated and ate very well. Long car rides are tough. just go prepared. Way safer than flying.

[HopeSprings]

Thanks all for the input and ideas. I think we're probably going to go for it. If it ends up being a really bad idea, well, it'll be the last time I do it, I guess!

Futurehope - thanks for the pep talk and encouraging words!

[roxie]

Last fall I rode from upstate NY to TX. It wasn't fun or comfy but I made it!

I don't have any great suggestions though. Stay hydrated. Lay back if you can. My exercise physio told me to make sure I get up and move around at least every 2 hours, preferably every hour

[Rachel]

When I have a long car trip I usually sit in the front, recline my chair, and put my feet up on the dashboard. It isn't a very safe way to ride, but it's the only way I can go anywhere in the car, even around town. I can't sit for more than 10 or 15 minutes with my feet down on the floor. If I am feeling particularly bad I lie down on the back bench in the van.

Wearing compression and drinking fluids helps. I also bring along pillows and a blanket to make sure that I am as comfortable as possible. We also avoid winding roads and stay on the interstate as much as possible. If there are a lot of turns or curves then I get exhausted from holding myself in my chair. I never knew in my healthier days just how much core muscle strength it took to sit in a car as it took curves. It is exhausting now and leaves me weak and shaky. If you are the same way then you might want to plan a route that will avoid as many curves as possible.

Long car trips are hard, but they can be really fun. It's great to see the sights along the way (even when it is only out of your window), and it is fun to see family at the end of your destination.

Rachel

[L4UR3N]

Drove from PA to the very upper part of Maine. They only problem that I have is with variation in elevations--such as hills. I feel horrible (cant get enoug air and dizzy) when going up a hill/ mountain and much better coming down, and the best at the bottom. Other than that had no problems! Just make sure you drink enough and stop for some breaks here an there . I really loved the drive and would do it again! Hope this helps <3

[TCP]

I have to have regular stops and toilet breaks. This helps with stiffness and pain. I also take some peppermint oil to sniff if I feel queasy (and also some lime/ginger oils) and this helps. I stay in the moment and don't fret about it. I look forward to the getting there and tell myself that the journey is fine and will be over before long. Keeping calm is key. Good luck!

[bellgirl]

You need to go!!....I just got back from my son's wedding. It was a 14 hour round trip. I didn't drive, but stayed hydrated, stopped every couple of hours to walk around. We stopped 3 times, and even though I did pretty well during the whole weekend, I was home bound for several days after to recover. It was worth every moment Don't let it stop you from living your life...There is another topic on things to do for motion sickness before you go, too. You need to check it out.

[Anoj]

this is my 2nd post here. i am not sure how people with this illness are able to travel! i have such a hard time in the car. i begin to faint after about 20-30 minutes. it is better if we go slower, so on the interstate we try to keep it around 55 instead of 70. i have only taken an hour-long car ride twice in the past 15 months since this all began. i was diagnosed with "dysautonomic syndrome" by my cardiologist. i would like to go to vanderbilt, but i don't know how i would get there. i feel it would be too dangerous.

[bellgirl]

Anoj...I would do everything possible to get to a doctor for treatment. Medication has improved my quality of life, immensely... I was doing horribly for 13 years without treatment. I shouldn't have been driving at all before treatment, because of my vertigo, dizziness, and running into curbs, etc.; now I am driving short distances, I'm a lot less dizzy and tachycardic, and I'm able to exercise again, which is so important for your overall health. Even if you have to go by ambulance, it would be worth it. Do you know anyone with a van or a truck, where you could lie down and prop up your feet? They do have medication for motion sickness, too. Some have suggested the scopolamine patch before, but they are on back order, (according to my pharmacist), so possibly another medication, so that you are able to get some relief while traveling...

[Hannah_mariet13]

I don't seem to have much problem on long trips. Except for some muscle aches and numb/tingliness from sitting in one spot too long. I haven't taken any really long trips lately, but i have taken many 2-4 hour trips.

[bunny]

My current work contract has me working 140 miles away from home, so I stay in a local rented apartment during the week and go home for the weekends. ~2.5-3 hrs depending upon traffic. Worst was 5 hours.

Overall, as long as I don't eat much, drink plenty of fluids before driving, and have enough energy left, it's not bad. I usually kick my shoes off before I start and keep my feet/legs active during the trip. Sometimes I'll even prop one foot/leg up on the seat.

Worst-case scenario is if I'm feeling sick or exhausted and eat a heavy meal, and am a passenger. Guaranteed I'll have an issue there so I'll just recline the seat slightly and lock the seatbelt tightly and see if I can fall asleep before it hits me. Sometimes I'll add a glass of wine and then I know for sure I'll be sleeping before I pass out.

I much prefer flying at this point -- I can get up and walk around if I need to and most importantly, there's someone else doing the driving.

I'd say go for it anyway! Make a few short-ish trips and work your way up to it. You could stay home & feel sick or be in the car & feel sick. Either way, you're still going to feel sick. You might as well get some benefit out of the time.

[julieph85]

I drove from Arizona to Alaska. Took a week and aggravated my symptoms. I made sure I got out of the car at least every two hours. Stayed hydrated and ate very well. Long car rides are tough. just go prepared. Way safer than flying.

Your statistically way more likely to die in a car crash on the way to the airport then in the airplane.

[heathmcev]

Naomi, I took a car ride from DE to GA last May with POTS. I only drove in short shifts as I found I got worn out very quickly and would start feeling drowsy. Let my other family members do most of the driving while I sat in the front passenger seat. My biggest dificulty was overstimulation which exacerbated the dizziness I get from too much movement around me. Hopefully you don't have this issue, in which case staying hydrated is probably the biggest thing. It's easier if your family understands there may be a lot of pit stops!! It may also be good to think about the train. You can get a sleeper car and lie down, or recline in a seat. If you want your car in FL the auto train is great. My parents just took it last week. It goes from Virginia to Orlando... so you'd only have to get yourself south of DC...

Hope you decide to go!! Even if you can't do all of the activities you'd like once in FL, you'd see your family and feel SO proud of yourself for accomplishing the trip!! One more thing... even if you don't end up needing it, plan on resting the first day you arrive in FL. I found once I got to GA I was more tired than expected from the journey... but 1 afternoon in bed and I was able to be up and enjoying myself!