Travelling tips anyone? (car)

Travelling is becoming increasingly difficult for me.
Short trips by car can be done if absolutely necessary, but longer distances are getting almost impossible.

My wife and caregiver would like a change of scenery sometimes (understandably); we used to travel a lot and were always very "outdoorsy"

We have a holiday home in Germany but it is a 4,5 hour drive and the last 3 times we went I spent the entire stay in horrible PEM.

I went from driving myself, to sitting in the passenger seat, to lying on the back-seat, to lying completely flat on a mattress in the back, with all the seats down. Added Bose QC headphones and sunglasses to minimise sensory input.
Sitting up too long impossible (OI).

None of this helps anymore, still getting worse. I am a total wreck when we arrive and even worse the next day. Sleep will be totally gone for days. Than recovering for the entire duration of the holiday, and again crazy sick after we arrive home again.
Such fun.

I don't care if I am in bed at home or in our second home, but its getting very hard to get there and totally not worth it for me anymore. But I would still like to go because my wife loves it so much there. She is already missing out on way too many things.

I guess the PEM is caused by overstimulation of nervous system in the form of the constant little shakes and little bumps and movements that the car makes. But the recovery time is impossibly long. (weeks)

Can't believe I cannot even be transported in supine position anymore, even lying down flat with eyes and ears blocked.

Anyone have similar experiences with car travel? Any tips maybe?
Taking brakes does not help. It only prolongs the trip, making it worse.

 

Some questions for you:-

What time of day do you travel?
What's the journey like, is it mostly flat and straight, or are there lots of hills and turns?
Is there often a lot of traffic (lots of speeding up and slowing down)?

I get pretty bad Orthostatic Intolerance type symptoms on car journeys. Makes me feel dizzy and nauseated. I find when people drive in a way that minimises G force, it's a lot easier to endure. Avoiding traffic helps with that, travelling at night might mean you get a clearer run to your destination.

I wonder if minimising sensory input actually makes the journey more difficult in some ways. Probably not the light so much, but our ears are part of our sense of balance and with the forces you experience inside a moving car, your sense of balance is going to recalibrate repeatedly. By sharing that recalibration between the senses, it may be easier to manage.

Of course I realise that might not be an option for you. But it might be worth experimenting if it's not too unbareable.

 

Thanks Matt,
We travel early in the morning (weekends) when there is not a lot of traffic. Afternoon is worse for me.
It's almost all Autobahn but not the excellent quality you would expect in Germany... Last 30 minutes has a lot more hills and turns.
We try to minimise G-Forces.
Might try without ear-blocking next time; thanks for the tip.

 

I'm still at the passenger-seat phase, with only short journeys, so my input may not apply--as I am seeing and hearing all the things that (newly) switch me to SNS/adrenergic mode. But FWIW, I find taking back roads rather than multi-lane highways or busy main arteries greatly reduces the stress of travel for me.

It's possible the body perceives high speed travel as a threat even with all your sensory protections--is it practical to try routes that don't involve fast speeds like the autobahn?

 

I have gotten terrible in a car, especially back seat and when too much breaking, bends, g force etc. I get severe nausea and vertigo and get desperate to get out of the car and vomit

I really feel for you, and I can understand you want to go for your wife.

I don’t really know what to suggest, Trish, Allele and Matt’s tips are good.

 

Very interesting point. Intolerance of high speed car or motorcycle travel was one of my first symptoms, it started 4 years before full blown ME.
This was of course diagnosed as anxiety / panic attacks and cbt was prescribed. Yes we have way too many psychologists in the Netherlands. I knew for sure that anxiety was not an issue. My body just did not tolerate high speeds anymore. Cant watch high speed car chases or other fast moving action in movies or videogames anymore either.

 

Thanks, it will probably come to that.
Who’s interested in purchasing our house in Germany?
Sorry that's probably a forum-rule breach.

 

Hi @Mattie so sorry you’re struggling with this.

My intolerance of driving is not quite as bad as yours, but it’s similar. Even short bus or tram rides can wear me out faster than almost anything else.

I can manage up to two hours in the car, but no closer than a week apart. This allows me, barely, to visit our summer house at least a couple of times per season, even if weekends are out of the question. It’s paradise on earth for me to be there and I’m not sure I could live with not ever going (see my avatar).

I find that ibuprofen is actually what helps me most. Like you mention, it feels like the entire nervous system is on high alert and is being deep fried to a crisp. Sunglasses and avoiding too much noise helps, but I don’t really feel better shutting it out completely. I sit up with my legs in the seat.

Ibuprofen (400-600 mg), sometimes combined with a small dose paracetamol for more effect, really takes the edge of for me. I don’t use it a lot otherwise, and I tolerate it well, but it’s the only thing I’ve found to limit the heavy toll on the NS. I typically take it before we get in the car and during or after the trip as needed. My doctor has assured me I could potentially take 600 mg 4 times a day for two weeks without causing issues, so 400 x2-3 on a single day is certainly fine. I realize this will not be a good solution for everyone.

If needed I take some the next day as well. I still get PEM, but it’s on a more normal level and I avoid a full out crash. My hips tend to be really messed up after the drive, but that’s a muscular issue that needs the attention of a chiropractor

 

Thanks. certainly worth a try. Did not know that Ibuprofen could have such an effect on the NS.
That place on your avatar sure looks spectacular!

Here's a photo of "our" little village:

 

@Mattie I don't really know that it is the nervous system to begin with, just what it feels like to me It could be systemic inflammation and that's why the ibuprofen helps, but either way to me it feels like it's calming the entire system down a bit. I'm still not enjoying the ride, but I feel like it's more manageable and the aftereffects are milder.

ETA: That looks like an amazing place to stay! Hope you can get there without destroying yourself in the process

 

Hi, @Mattie I'm terrible on the road as well.

I can not at all lye flat; I have travel in the front passenger seat and sit very straight, yes even for 4 hours if need to be (suffer back pain later) and look very straight to the road, nowhere else.

I also need to fast during the journey and wear a neck support. I use CBD oil suppositories really help to relax me. One other silly thing helps, no idea why but I tape my belly button, this helps with the nausea.

Good luck.

 

Wow, @erin, that's a new one on me! Do you have fun tape like Hello Kitty or Batman?
I get carsick fairly easily too, I'm gonna give that a try.

 

@Mattie, can I come live in your village? It's gorgeous!

 

I use ordinary plasters

 

Wow, @erin , you are obviously missing out here. The possibilities!

 

omg, i can't even choose which ones to send you erin!
http://www.funslurp.com/unique-band-aids

 

@Mattie
So sorry. I am exactly the same. Cannot find anything to help. We do a 7 hour journey once a year. We stop overnight halfway. This year we are going for 3 weeks so that I can get some time without pem. Diagnosed 10 years and this problem is getting worse.
All our family live at a distance and we see less and less of them. If you find anything to help, please post and good luck.

 

I wonder if taking something like GABA would help calm the brain from over-stimulation during travel?

I used to use very low-dose (0.25mg) clonazepam daily, until I decided to come off it for mitochondrial relief. Now I find it is really useful in every-so-often situations, esp bc its half life is longer than 24 hrs.(I understand many people can't or won't use this class of drug.) I mention GABA bc it works in a similar fashion but does not cause dependency, and isn't toxic to mitochondria long-term. Weirdly, over time I developed a bad reaction to GABA but tolerate clonaz just fine.

Anyhow, the gist of what I'm sharing is maybe we'd have less travel crash if we were chemically helping the brain to remain calm. In the US there is a nice formula from Allergy Research aptly named Zen, which contains GABA and L-theanine, it is a very soothing combo.

The other thing I wonder about, for long-haul travel, is the sleepy kind of anti histamine. There is one from australia I like bc it's a triple hitter: anti-nausea, sleep-inducing, and of course anti-infammatory. (It's called Avil and contains pheniramine.)

Just brain storming over here---so to speak.

 

I nearly posted this earlier, but didn't in case it would be too left field, or too over the top.

Whitney Dafoe takes a tranquilliser before going to hospital, and it seems he is very temporarily a fair bit less unwell, relatively, and can manage the travel. It seems it increases rather than reduces his functional capacity, and I've heard/read other people say they find the same thing.

It could only ever be a temporary solution, as tolerance builds quickly, but potentially very helpful for managing occasional situations.

Natural options to raise GABA include valerian and kava kava (but these maybe not strong enough), legal substances include phenibut, and then there are prescription drugs like benzos and the (non benzo) z-drugs.