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1323747 tn?1364806882

Altitude's effect on Autonomic Dysfunction

I am newly diagnosed with Pure Autonomic Failure.  When my BP drops there is no compensatory increase in heart rate. What I note with exercise is first a deeper respiration, secondly an increased force of heart contraction and thirdly increased RR.  I have heard that increased altitude has an affect on  autonomic dysfunction.  I want to visit the Denver area and wonder if that altitude would cause me problems and if so what type and what precautions would I need to take.  I normally live at 1400 ft. and Denver is a mile high.  Has anyone else had experience with increased altitude?
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1323747 tn?1364806882
I appreciate hearing of your altitude experiences.  I had high altitude sickness once by hiking up to 11,500 too fast and not staying hydrated.  I was in my 20's and I could not stand without fainting.  My husband had to leave me and find snow to melt down and bring back for me.  Hope never to repeat that experience!

I have recently been to about 5000 feet without problem.  Right now however I am getting SOB with very little exertion and we are sorting out the why.    I liked to be prepared so when I read about the altitude of flying caution in two places I really paid attention.  One was on that list of things not to do on the dynet site and one was in an article from Vanderbuilt I believe.  These tho were short cautions not explanations.

The article I found that went into the physiology helped me understand it better.  It was in a physiology journal and was entitled, "Effect of acute exposure to 3,660 m altitude on orthostatic respo.  I found the site at http://jap..physiology.org/cgi/content/full/95/2/591
With footnotes it is a good 23 pages long so a bit lengthy..  Again, good article on the basic physiology of altitude.  This of course is talking about very high altitude as this is in meters and also sudden change and the study was performed on normal people.  

Hope this is helpful background material for you.  I actually got a finger oximeter as I want to document my flight, whenever it does occur.  This one was not expensive and correlates well with the one in my doctor's office.  I wanted too to have it about as I am getting a lot of fluctutaions in pulse/BP and sats right now.  Marie
Helpful - 0
1401877 tn?1288107639
Hi, I don't know the physiology behind it but I can tell you that several years ago (before my POTS diagnosis) I went to Tibet near the Mt. Everest base camp and spent the night in a tent in 15 degree weather at about 16,000 ft. This is when I had my first real 'fainting spell'... I'd had POTS symptoms for ages but this was much worse and kind of scary.  That's a pretty extreme altitude and conditions though and we had to acclimate for several days at 10,000 ft before we could get higher.  Now, about twice a year I vacation with my family in Jackson Hole, WY which is at about 6,000 at the base of the mountains (I go up higher ~7000 ft when skiing-mind you I can only do about 1 run downhill) and I'm fine at that altitude. The first day or two I might get some bad headaches and feel reeeeally exhausted but it subsides after day 2.
Everyone is different but it's important to pay really close attention to how you feel and not ignore any symptoms. Some symptoms will subside but if they don't they could turn in to edema (swelling) of your brain/lungs which is very serious.
I'm not sure if anyone mentioned this but you may want to stay hydrated...  :)  Kidding aside, it's very true.
I'd love to see that article you found, I'm curious about the physiology of it.
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1323747 tn?1364806882
Hello and good to see you here.  :)

I have been off line for a few days and just saw your post.  I found an excellent article on the physiology of high altitude.  When I read it I could understand how altitude can make a difference for those with autonomic dysfunction.  How much I would think depends on the individual.  I also read quite a bit about oxygen for disabilities and how some airlines pressurize the cabins anywhere from the equivalent of  5000 or 6000 to 8000 feet.  That can make a significant difference for some.  I have been wondering how to predict how I will do on a flight.  I guess of there was a way to drive to a mountain peak and see how I do I would feel more confident.  I think too it pays for us to make sure our oxygen carrying capacity is optimum as in no anemia so we have adequate hemoglobin to carry oxygen.  

I have seen two warnings about the possibility for problems while flying: One was for POTS and one for Autonomic Failure.  

I literally just came in the door, rather worn out, and have not had a chance to go through my articles.  I will come back to this perhaps tomorrow and give some references.  I think this is an important topic.

I also have found some excellent sites about oxygen on ariplanes.  Each one has a little different policy and there are hoops to go through if it is needed.

As for your actual question, how high is Belgrade?  There are formulaes for predicting the difference in oxygenation.  For sure I have read of people getting into trouble in the Denver area where it is about a mile high.  Does your husband have any other relevant diagnoses as in heart, lung or autonomia besides the neuropathy or a history of smoking?

Maybe others here have more  thoughts and comments.  Marie

I
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Avatar universal
My husband was just diagnosed (at Mayo, Phoenix) with autonomic neuropathy. During our stay in Arizona my husbands health improved dramatically (we live in Belgrade, MT at a higher altitude). Now we are back in Montana and again he is again dizzy and not feeling well.  Not sure if the difference would be from the sunny, warm weather or if altitude might have a part to play.  Any idea?  Diane
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1323747 tn?1364806882
First of all I am so glad your present environment is easier for you oxygen wise.  What a difference per your description!  I am so grateful for all the advice from members of the community and you have given me some new leads and ideas.  For sure I will follow up on the mineral you mentioned and link to the body compression sites. Best too to go with Rx in hand and not have to get one while there for oxygen.  I am wondering now if those small portable oxygen compressors are hard to rent.  Not sure what would work best  Thanks for all the ideas!  Marie
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1272082 tn?1343103540
mtgardner,
I used to live in CO and my home was at 7,000 feet.  I recently moved to AZ at 1,000 ft.  What a difference altitude makes.  I had to use oxygen there.  I felt horrible.  I could hardly climb the stairs to get into my apt.  I had to use the oxygen every night continuesly and needed it sometimes in the day time.  If you do go make sure you have a RX for oxygen.  My guess is you will need it there.  I traveled to Denver pretty regularly it wasn't quite as bad there as in Durango.  DON'T go climbing or exercising in the mountains.  That will get you.  People don't realize what the altitude can do to  people.  For people with POTS, PAF or heart issues it can be deadly.  There is a mineral you can get from the health store that will help increase your oxygen.  Mountain climbers use it when they do those crazy climbs.  I can't remember the name of it.  It starts with a G.  (I think it's Germanium).  It is, I had my husband go get it for me.  Suma is a natural form of it too.
The other thing is to be sure and wear full body compression.  I went to the Bali, Hanes outlet and they have some real good long leg compression pants and a tank and I put my compression hose underneath.  It's a little warm, but makes a huge difference.  The ones I like are by Barely There.
The other advice about drinking is real important.  You will dehydrate there so easily.  It just ***** it out of you.   You might even get a RX for IV's in case it's necessary.
People get sunburned easy, because you're closer to the sun.  It happens much faster than at the beach.  Hats, very necessary.  Umbrellas help too.
Otherwise, CO is one of the most beautiful states there is.  I say "live your life".  You just have to be prepared for possiblities that may happen.    Enjoy your trip.
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1323747 tn?1364806882
Thanks for the valuable input!  This is all new to me and I am trying to be proactive so your experience is invaluable.  I had not heard of the Erythropoiten tx so I appreciate the link and will research that and talk with my doctor before my trip. I don't handle temperature changes well so will also investigate the link to the neck cooling device...I don't think I can have too many tools and options in my toolbox this summer.  I truly appreciate the descriptions you all gave of your own personal experience and tips.  I have printed all out and am making a file.  My HR cannot go up so my problems will be with increased contraction and the respiratory system and lack of O2.  I have had some changes in respiratory pattern that are new to me at times of increased energy expenditure so your descriptions were relevant.  I have Raynauds too but have not had it come into play in the summer but under the stress of elevation I would not be surprised.  I am thinking that the worst case scenario would be suddenly needing supplemental oxygen. Thanks for your help on this!
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645800 tn?1466860955
Just this last april I drove out to Oregon via Denver. The changes in altitude were very noticable to me to the point where at about 6000 feet my lips were turning blue, and at 8800 my finger tips were also. Other effect I felt were headache, lungs hurting ( probably from trying to get enough air), and light headedness. If I ever make that trip again I will probably see about getting some o2 to take with me.

Dennis
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Avatar universal
Hello,

I have found out a while back (way before I was Dx with POTS) that I suffer from altitude sickness. I found that the hard way while on an extended holiday in the American Southwest. After a while I could tell the elevation just by my breathing, heart rate, and tiredness.

For me it usually starts at about 7000 ft with mild symptoms and I could not camp above    10 000 ft because of Cheyne-Stoke breathing  -  
                                                                      (also known as periodic breathing; is an abnormal pattern of breathing characterized by oscillation of ventilation between apnea and tachypnea with a crescendo-decrescendo pattern in the depth of respirations, to compensate for changing serum partial pressures of oxygen and carbon dioxide. - From Wikipedia)

while asleep, with extreme anxiety that would wake me up at night (my husband thought that I was suffering from the "little, cramped, there is no place to move" tent syndrome :-)  ).

During the day I was quite intolerant to exercise, had bad headaches, suffered dizziness, and my heart was quite tachy, even doing nothing.

Now, since you suffer from Pure Autonomic Failure, I don't know if you would encounter the same problems that I did, and at what altitudes. You should surely talk to you Dr about your trip, and see what he advises.
At the time I was offered to take Diamox, which is an old fashioned diuretic, that in some ways help with altitude sickness, but with dysautonomia, diuretics are not too good of an idea!

As Evo mentioned, Denver is at an altitude of 5280 ft, so maybe you will be fine, but with your PAF you might still suffer some altitude effects, mostly if you live most of the time at sea-level. Incidentaly, I have spent some time in Denver on my way back to Canada and I was fine.

I think people gave you very good advice  -  hydaration, hydration, hydration; compression hose; sunscreen -
I would add - carry small, nutritious snacks with you at all time to keep your energy level up, and if you have a heart rate monitor, wear it as much as you can when you are up and about just to keep an eye on your HR.
If you go to Denver during the summer, and heat exacerbates your symptoms (as it does mine), you might want to buy one of these

http://www.bestglide.com/neck_cooling_scarf.html

I bought one for a trip to Bryce Canyon, during the summer, and it was a godsent.

I also added this link to a very good article from the American Family Physician named -
High-Altitude Medicine - they reckon that high altitude starts at 4921 ft; so that would include Denver by a few hundred feet.

http://www.aafp.org/afp/980415ap/harris.html

Hope this help :-)
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612876 tn?1355514495
Have you talked to your docs about your trip?  I have NO idea if this is ever done on an as-needed basis, so I might be talking out my ear here, but there is a medication that boosts red blood cell production.  Maybe you could get a dose just before your trip to help boost the amount of oxygen your blood is carrying??  If that would help??  

http://en.wikipedia.org/wiki/Erythropoietin
http://www.medhelp.org/drugs/epoetin-alfa/show/3877



It is used (on a regular basis) as part of the treatment protocol for some dysautonomia patients, though less commonly than other medications such as midodrine and fludrocortisone.  And as I said, I have absolutely no idea if anyone has ever gotten it as a one-time deal just for a specific need such as this.  I thought I'd just toss the idea out there in case you'd never heard of it or hadn't thought of it and might want to bring it up with your doc as an option.  It may be a crazy idea--it is almost 4 AM--I'm not sure I get my best ideas when I have insomnia and a flare up of heat intolerance.  :-p
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1323747 tn?1364806882
Thanks for the input.  I think people who live at high altitude develop more red blood cells so they are in good shape going up and down.

I think you are right that the lack of oxygen would be perhaps the bigger problem for me.
Since my heart rate doesn't speed up under increased need my respiratory system would have to take up the slack and in less oxygen it might get quite a workout.  I suppose it would depend on my activity level and the temperature etc. how that would work for me.

I am not going yet but when I do go I will take all the precautions and have a back-up plan.

Thanks again for the input...:)  
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Avatar universal
AMO
hi mt  gardner

i do not htink ii have any help, just to say   i    livve at 7,000ft. but i have my adult life.
I see no difference when ii go dooown to a mile, or to sea level for that fact.
i   know some elderly come from lower and tkae a day or two before going higher. but 'ii think'  it has  to do with O2 levels   especiallly in lung/heart disease.
evo is right, water, water water. with dry climate and altitude. Also, sunscreeen, being closser to the sun,especially lip  block....it can tend to bring out herppes v irus if you harbor it  and lips get burnt.
good luck,,, and have fun!
amo
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1323747 tn?1364806882
Thanks for the informative reply!  I will for sure go to the link.  I am so glad this community is here as I have more questions then answers right now.    
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Avatar universal
I have no experience with being at high altitudes so I can only comment using the information from documents I have read.  

People in general begin to suffer the effects of high altitude at around 7000 - 8000ft, but some with certain health conditions can begin to become symptomatic earlier.  

You state that Denver is around a mile high - this converts to approximately 5280ft, so you would be at a lower height than the usual for altitude sickness, but this said as you suffer from PAF it may be likely that you will begin to feel the effects of this at a lower altitude.

At high altitudes the air becomes thinner, therefore, it holds less oxygen and in turn you will recieve less than your body needs to function correctly.  

Symptoms that one would experience at high altitude include, nausea, headache and fatigue - some suffer from this at a worse extent than others.  There are other more serious symptoms that can be felt when at higher altitudes.

I have, strangely enough, just read a blog written by a fellow sufferer, who has just been on a fishing trip to Denver and comments on the effects of altitude on his condition.  He does not say he has PAF, just talks about his dysautonomia.  He also says that he went to heights as much as 8000ft above sea level.  Below is a link to his blog:

http://www.12morepages.com/blog/?p=143

I hope this helps.

Please note that important factors for you on your trip would be to ensure that your fluid intake was high during your trip and if possible, wear comoression garments, preferably up to the waist.  These would help with keeping your blood pressure up.
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