Travel Advice Sought!

[mkoven]

Hi everyone,

I've posted a lot recently on my recent flare. We recently drove from Illinois to Virginia for the holidays, and it was very hard on me. I now have to figure out how to get home safely. Typically I ride in the back of a minivan, with the seats collapsed on a camping mat, lying down-- for my back, primarily.

But on the road out, the combination of the motion of the van, worse with acceleration, and changes in elevation as we went through west virginia and western maryland were awful. I felt faint and like I couldn't breathe. I really don't want to repeat on the way home. I can fluid and salt load, but I will also be closer to my perdiod, when i feel worse. Currently I'm only on midodrine, but can't take that if I'm lying down. My husband is dreading the trip, but doesn't know how to avoid what he calls simple facts of geography--like the allegheny mountains between points a and b.

Any advice? I'm not looking forward to it. I can take ativan for my nerves, but what to do for the actual symptoms??? just drink gatorade till my eyes bug out and we have to stop every 20 minutes? as soon as i get out of the van i usually feel a lot better. but my husband can't deal with this much more either. he'd gotten used to eds affecting my joints, but not the faintness. i think he may never want to travel with me again. if i didn't feel the need to leave rural illinois, (which i do!), i could deal!!

thanks!!!

Michele

[Sunfish]

hi michele -

sorry that the trip out was so rough on you. the one thing i wanted to mention to you is that for some people (me being one of them), it can be entirely okay to take midodrine lying down. if your doc has specifically told you never to do so and/or if you know that your BP spikes really high if you lay down with the midodrine then just ignore me altogether, but if you're "just" going by what the prescription insert says you may want to explore the issue.

obviously it would be best to talk about this with your doc but if that's not an option & you have your own BP monitor i suppose that you could choose to make the call on your own based on a trial run at home when you have the option to be up or down. i'm NOT telling you that this is what you should do but wanted to at least give you the heads up that - if not for now - it might be something you might want to ask your doctor about for the future, i.e. during a flare up, before your period, etc.

just to share my experience a bit more midodrine improves my functioning even when i'm entirely flat. i can feel when it "kicks in" so to speak....not b/c of any side effect (i haven't gotten the scalp tingling for years now) but rather b/c it improves how i feel both physically & cognitively.

i do hope you are able to get home in a more comfortable fashion.

melissa

[mkoven]

Thanks, Melissa. I'll have to do the experiment and see what my supine bp is on it. How high do you think it would be safe to let it go--140/85???

[flop]

Hi Michele,

everyone has their own blood pressure range that is within limits for them. If you normally run an extremely low pressure then you might feel ill at a high pressure. If you often have relatively normal BP readings (whilst on Midodrine) then I would guess that your body could tolerate the numbers you suggested for one day.

I think Melissa's suggestion of trying it out before you travel is a good idea, then if you feel awful or your pressure goes very high whilst lying down you can sit up until the midodrine wears off.

The "no midodrine whilst lying down" advice is given by a lot of doctors but not all. One doctor even told me to take a dose at bedtime every day so that my BP isn't too low when I get up to use the bathroom during the night.

I hope you find a solution so you can get back home more comfortably than the journey outwards.

Flop

[darren]

I dread road trips as well. I have found that I'm better off drinking lots of water and stopping every hour than getting a migraine 2 hours into a road trip. I also take midodrine and lay down. If I have a big day I will move my midodrine dosages closer together.

I have not found a way to make a 12 hour road trip bearable but it hurts less if I drink lots of cold water.

[wareagle]

Maybe try some compression? I haven't traveled much since POTS...but I know that lots of people recommend using compresstion hose or girdles for flying...maybe it would help with driving in high altitude as well?

[mkoven]

I made it home. It took two days. The ends of the day are always worse. the shortness of breath worsens with acceleration, and at one point when hubby accelerated superfast, I felt instantly MUCH WORSE. He had to stop by the side of the highway so I could cath my breath. If I really focused on breathing super-deeply, to use all available lung-space, it was better. Also slow transitions.But I really had to think about my breathing, and my chest was really sore. I also noticed my nose got really congested-- maybe vasodilation??? It improved when I got out of the car. I don't otherwise have a cold or cough or sinus infection.

Given how much I like to get out of my small town, this is really annoying. It's hard to stay calm when it's hard to breathe.

How to explain the effect of vehicle speed on symptoms??? Changes in elevation definitely make things worse, but the last stretch was flat-- Indianapolis to Champaign. Sheer fatigue from a day in the car???

I've also noticed that I have a hard time adjusting my breathing from upright to reclined. It's like too much air all at once?? or too little??? I've noticed it's worse when I fully exhale than when I inhale.

All those adjustments that are s'posed to happen naturally, are slow and deliberate for me. And the chest pain now definitely feels breathing-related. (I've pushed my event recorder each time, and when I call it in, it's normal.)

[Guest tearose]

I think the changes in altitude do have to do with how we feel cause I have experienced it.

My new thought... was there a change in temperature too?

I have been having MAJOR issues with temperature this fall and winter. I can in an instant feel palpitations and sob of a new sort just going from my warm car/house to the outdoors. I never was that sensitive before.

Just give it a thought. Maybe you have become more sensitive to the cold?

tearose