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Posted

I am leaving tomorrow for a trip to Colorado. I am just a little nervous a) because I will be in a cabin in the mountains, with no civilization within 20 minutes (meaning no hospital in the event of a POTS emergency!) and :rolleyes: I don't know how/if the elevation will affect me in a good, bad or other way. Wish me luck, and if anyone has any info/ideas for me, let me know. I don't have to worry about low BP, so that's not an issue. I am taking the train -- a 16-hour ride, but I hate to fly so it's worth it for me.

Hopefully my 7-month-old will cooperate. I wish I had a sleeper car but we couldn't afford it -- it would have cost $900 round trip for me, my husband and baby!

Also, if anyone is taking Lexapro or Celexa, I have been having very bad fatigue lately. I didn't notice it the first week I starting taking it, but now I am on week 4 and it's pretty bad. Does it tend to get better?

Posted

calypso

It will probably take your body some time to adjust to the altitude change--more than the average person. I didn't know I had POTS when I went to the Andes in 2000. It was my first experience with strange symptoms. From the moment we landed at the airport and I had to stand up, I knew I was going to have trouble. I felt dizzy and like I couldn't get enough breath. I had the worst time adjusting of everyone in my group and I had to basically rest in bed for a day. After 3 days, I was ok and was even hiking (lightly).

So, you may find you will need to take it easy and let your body adjust. Hope it goes well and that you enjoy yourselves!

Posted

Traveling by train may be the way to go--you'll be heading into the higher elevations over a period of time (not suddenly and all at once, as in airplane travel) ... Your body will have extra time to adjust to the higher elevations -- and it will happen incrementally! I agree with Katherine--take your time, don't try anything too strenuous in the first day or two, and hopefully you'll adjust just fine. (Who needs hospitals anyway; they never help much, right?)

That clean mountain air and beatiful scenery will be very healing, I think. Relax and have fun!

Merrill

Posted

I was up in the music camp above Estes Park in 2001 for a week. No problems there. It is on the edge of the Rocky Mountain National Park and we took several car trips into the park. I was Ok, I just couldn't walk around a whole lot at the higher elevations. it seemed like if I was below the timberline I did better - or as good as I ever do!

Posted

I take Lexapro, and have been in on it for a year. I take a very low dose, 2.5 mg. It took about 6 weeks to get "used" to it, but after that, I was fine. Good luck with it. Also, I am going to Wyoming in 2 weeks - it may be hard for us, but we'll both survive the mountains!

  • 7 months later...
Posted

Just another question on this--

I am thinking about travelling to Colorado this summer to visit an old friend and her children with my daughter. The elevation is about 7,000 feet. I am a little nervous about it--even tho I have managed much higher altitudes prior to diagnosis. Calypso--how high were you on this trip you mentioned? Anyone else have any experiences on specific elevations to share?

Also, I just wonder if it will be hard on my 2 and half year old and if I should be concerned about that--but I know that it OT.

Thanks, Katherine

Guest tearose
Posted

Amy, a vacation, that's wonderful!

We went to visit family in Denver and I did better on day two. Just felt tired. I did have more trouble going up Pikes Peak... felt a smidge dizzy and short of breath. I remember reaching for salty crackers and water and laying down. I think that when we drove up the peak my body could have used a few more stops, I didn't know it then, but now I know to take the climb more slowly. So, I think you will do fine if you are prepared.

Enjoy the beauty! tearose

Posted

Steph and tearose--thanks for your responses! It gives me some confidence--I just need a little reassurance even though I KNOW it will all be fine.

Tearose--and others--I should have emphasized in my response to this today that the orginal post by calypso was July 9, 2004! I just am feeling jittery about the altitude issue and remembered this old post!

Thanks all

Katherine

Posted

Katherine, interesting you bring this up at this time. We are talking about going to Durango (by car) for several weeks this summer on vacation to avoid the heat here at home. The altitude in Durango is not as high as where you are going but I think the idea of going slowly and letting our delicate systems make the adjustments as best they can is really good advice.

Guest tearose
Posted

That's funny Katherine! I hadn't noticed the date. It was new to me!

I guess I should be more observant.

I think you will have a great time if you plan accordingly. Since you are already thinking this through, I think you'll do marvelously!

You probably know that little ones benefit from sucking on a lollipop or chewing gum in case their little eardrums are having trouble adjusting to the altitude. I can't think of anything else regarding your daughter.

Happy planning, tearose

Posted

Hi Katherine!

Have a wonderful time in Colorado!!! I absolutely loved it when I went there. We did the whole Pikes Peak thing and I did well. Although, I was very cold. It was late July and 88 degrees below, but only 48 degrees at the peak. I was wearing shorts and was freezing my butt off. Come to think of it, we made that trip before I got POTS. I got POTS in September of that year.

Since getting POTS, I've been to the Grand Canyon, the mountains in California, Oregon, Washington State, Idaho, and Montana and did not have any problems. It was absolutely breathtaking--the view, that is. :lol::)

Have a great time and let us know how it goes!

Love,

Kristin :)

Posted

A trip to see friends in a beautiful setting sounds very therapeutic indeed! It'll be grand -- and you'll have a wonderful time!

The suggestions to take things easy as you get used to the altitude sound right to me--don't overdue the walking in your first day or two.

take care,

m

Posted

Katherine:

You'll do wonderfully, I'm sure! I didn't have time to read through everything posted here, but one thing I don't think was mentioned is that the average commercial airliner cabin at cruising atltitude is pressurized to about 8,000 feet. So, your trip to 7,000 feet shouldn't really cause you any troubles, if you don't tend to have any horrible symptoms while flying. Granted, you'll be walking around and exerting yourself on the ground, but after a short period of acclimitization, you should be feeling like you do back here on the flatlands of the East Coast!

Incidentally, I am considering hiking Mt. Rainier this summer (14,000+ feet) and I've been doing a lot of reading about altitude sickness. It's very interesting that staving it off it really is about allowing your body time to adapt - about a day or so for each 1,000 feet above 8,000. Even perfectly healthy people have issues with this (as do the very physically-fit - susceptibility to altitude sickness doesn't seem to depend on fitness level, but rather genetics and maybe a bit of luck!)

Anyway, enjoy that Rocky Mountain high!

Best,

RunnerGirl

Posted

Katherine,

I live in Denver so I'm already at altitude. Mile high city. I do fine with higher altitude during drives in the mountains etc... if it's a short trip. When I first got sick my husband and I spent a weekend at Breckenridge which is about 9-10,000 ft. That was hard. My heart was racing all weekend and I didn't feel well.

You should be OK at 7,000 ft but keep in mind that even people without dysautonomia take a few days getting used to altitude. Keep hydrated and take things slowly until you adjust. The air is dryer at altitude so it's easier to get dehydrated.

Posted

<<Just wanted to add one more caveat that may or may not apply to you, especially if enjoying a family trip, and what you can tolerate. But if you drink alcohol of any kind, and attempt to do so in Colorado you will probably get very drunk, very fast>>

Good point, Steph! I know I tend to feel a tad loopy even after just one small glass of wine on a plane, whereas one on the ground (at sea level here at home in Maryland) usually doesn't phase me. I've always been a cheap date, but I guess I'd be ridiculously cheap if I lived in Denver! :-)

RG

Posted

Hi:

I am a professional musician and I spend every summer at a music festival at the Grand Tetons in Wyoming. I do tend to have altitude issues....not to mention BIG dehydration issues while I am there....I have had to go to the ER for IV fluids on occasion. The best advice I can give is DRINK CONSTANTLY....and be sure it's a sports drink and not just water....drinking tons of plain water can dilute your body's electrolytes and really throw you off. Be sure NEVER to be without gatorade or something similar.

I have found that when I drive instead of fly, I do MUCH better....Dr. Grubb agrees that a grudual increase in elevation is easier on the POTS body.

I always try to take it as easy as possible while I am there...no hiking really...I just can't handle it...but I do get around and have a great time....

Good luck!

Kristen

Posted

Thanks everyone for your replies. RG, I really appreciate knowing that airplane cabins are pressurized at 8,000 feet--that gives me a reference for how I might feel at 7,000. I did pretty much ok on my last plane trip last July. True that even people without POTS often have altitude adjustment difficulties.

Good point about alcohol. I have enough problems tolerating even a glass of wine at sea level! So, I don't anticipate doing any drinking at all!

Unfortunately I can't drive to Colorado, especially with a 2-year old, so I won't be able to slowly adjust. But, all of your reassurances have made me feel more confident.

RG--wow, hiking Mt. Ranier. You are an inspiration!

Katherine

Posted

Katherine,

Sorry I didn't have time to reply sooner. I am not exactly sure what the elevation was in the Estes Park area, but that's where we were. I am guessing it was more than 7,000 ft. We were in Rocky Mountain Nat'l Park, so I figure that's got to be one of the highest points in that area. I actually did quite well on this trip, excluding the fatigue from traveling (trying to sleep overnight in a train seat with an infant on my lap) and usual weakness I deal with -- we would go on hikes, but I swear it felt uphill both ways!

I don't care, though. It was amazingly beautiful and worth the extra effort. One of my cousins-in-law, who is 17, fainted and then vomited about halfway up one of the mountains. She happens to have low BP, and I think this was a factor. She, however, did not eat well that morning and was probably not adequately hydrated. These are definitely two things you need to do. Also, bring plenty of water for both you and your daughter if you go on hikes. And wear clothing that's light but long-sleeved if you're sun-sensitive; it gets hotter as you climb.

Have fun planning the trip! Let me know if you'll be in this area, as I can tell you more about what we enjoyed.

Amy

Posted

Hi Amy

Thanks for your offer. We'll be visiting friends in Idaho Springs. I see that Rocky Mnt National Park is not far away. I have never been to this area, so it's all going to be new to me!

I'll send you a private e-mail since it's getting OT!

Thanks, Katherine

Posted
Hi Amy

Thanks for your offer.  We'll be visiting friends in Idaho Springs.  I see that Rocky Mnt National Park is not far away.  I have never been to this area, so it's all going to be new to me!

I'll send you a private e-mail since it's getting OT!

Thanks, Katherine

Idaho Springs is not that bad re: elevation. The mountains here really are beautiful. Enjoy your trip.

Posted

Runner Girl,

Mt Rainier. I'm impressed.

I climbed a 14er the year before I got sick. It was amazing. A real challenge but lots of fun. My goal was to climb every 14er in Colorado but got sick and then developed this awful exercise intolerance that I still have. A few years into my dysuatonomia I was still able to bike ride at 9,000 feet but those days are long gone.

I hope you get to do Rainier.

GayleP

Posted
I climbed a 14er the year before I got sick.>>

Gayle, I'M impressed! Bagging any mountain at that altitude is quite a physical (and mental) accomplishment.

I will respond to your personal e-mail, too, but wanted to briefly highlight some of the questions you raised, since I have had others ask me about it, too. In particular, how I am able to have such a good exercise tolerance in spite of my condition. I must emphasize that I have never been diagnosed with full-blown dysautonomia of any variety. My EP calls it a "disturbance of my autonomic nervous system" - something short of full blown POTS. Also, it's not clear if that disturbance is more akin to POTS or to IST - I have features of both - again, in a mild form compared to most here. What IS clear is that I have a hyperadrenergic variant of ANS disruption.

When I first became symptomatic, I was in the final stages of training for a marathon. So I was very fit BEFORE the upset - I think that may have worked in my favor, but I guess we'll never really know. Anyway, I starting having very strange panic-like sensations at rest, coupled with sinus tach, blood pressure elevations, and other uncomfortable sensations associated with having too much adrenaline. It was very much like a panic attack - but I knew there was something else going on, as I had other symptoms. Sometimes I would get acute epidoses, but more often than not, I would just have days where I felt very weird. I would wake up feeling strange (nervous, sort of weak, as if I had low blood sugar), and I began monitoring my heart rate, something I never before did. My heart rate would be extremely elevated on the days when I felt 'weird" - like 100 bpm in the morning, lying in bed (WAY high for an edurance athlete, as you well know). And the slightest movement - standing, brushing my teeth, etc. - would send it to 150 or higher. And still on other days, I felt normal and these always corresponded to days when my HR would also be normal.

At the same time, also began feeling crappy during my runs (an 8:00/mile started feeling like a full out sprint!) I began training with a HR monitor and was shocked to discover how high my heart rate was going during exercise on certain days. Fast foward through the workup I had (cardiology, endocrine, psychiatric, etc.) After doctors could find no structural problems with my heart, and pheochromocytoma and other endocrine disorders were ruled out, I was told to keep exercising - so I did. I believe that exercising through these bad days also helped me maintain my exercise tolerance. It wasn't always easy, but I had so many reassurances from doctors that I was not going to die if my HR hit 190 or 200 during a 10K run, so I just kept running. I forced myself to run or do some other aerobic exercise, just as I'd always done.

I'm leaving out a lot of details - and I am sorry if I'm boring you and everyone else here! But I think I'll wrap just by saying the body is an amazing (if sometimes quirky) piece of equipment and it does heal itself and/or adapt to physical demands. I kept demanding things of my body (before, during and after my "illness") - and I think that's PART of the reason why I have maintained a fairly robust exercise tolerance - even compared to most 'normal' people. That, and, of course, the fact that I did not have as severe a case as others here. Please understand I'm not saying everyone can push their body the way I pushed mine. I did so only after multiple, frank conversations with doctors who understood my situation. And I was never bed-ridden, suffering from syncope, horrible fatigue or pain, or other things that would doubtless have kept me from pushing. It's not lost on me that I'm one of the 'lucky ones' - and I continue to post here to encourage others to hold on to their dreams of getting better - or climbing whatever mountain life puts in their way.

I feel strongly, Gayle, that the physical and mental toughness that allowed you to bike at 9,000 feet with dysautonomia - and climb a 14er - will continue to serve you well as you attempt to improve your exercise tolerance now. You may have to simply retrain your mindset to one of the turtle instead of the hare - slow, steady, and consistent.

Best wishes to you from someone who admires your accomplishments!

RunnerGirl

Posted

Runnergirl--thanks for this post of encouragement! I think you are right that many of us can again develop good exercise tolerance. The body, and the mind too, are amazingly resilient. Like you I needed a lot of reassurance from doctors that exercise would not be dangerous, or set me back. In fact, my specialist kept pushing me to exercise, regardless of high heart rates and other symptoms, insisting that I might at first feel worse, but in time would see improvement. I am not at all back to my previous level of fitness, but I am improved from over a year ago. I can now climb three flights of stairs easily, for example! There has been a lot of good discussion on this forum about exercise--clearly there are some postures that bring on symptoms and should be avoided, and as you say, you have to adopt the tortoise approach. It is slow going to see improvements.

Thanks geneva for your comments. I am excited about this trip!

Katherine

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