Altitude and POTS

[Mady]

Does changing altitude affect blood pressure and other POTS symptoms?  . I am traveling to Santa Fe New Mexico which is 7200 feet high. I’ve been having trouble lately with low blood pressure at night and low oxygen level.  I have had parts for nine years.  It has recently been giving me more problems.Any suggestions or information? Thanks so much. 

[gackedo]

I just spent some time at altitude and it definitely affected me. They say to stay very hydrated to help with symptoms but I still got winded when I tried to be active. 

[Scout]

In my case, altitude does make me more symptomatic. 

I always have a bad flare when flying, and the few times I've been to high altitude over the last few years, I have noticed feeling more poorly. I assume it has to do with how the slightly lower oxygen changes demands on the body, and how our system is already struggling.

 

[Sushi]

I live at about 6000 ft (high desert, dry) having moved here from sea level. I have not noticed any BP changes (I am NMH) but have noticed a lowering of oxygen levels. Functionally this climate is better for me because it is arid but I’d guess the response to altitude is going to be individual. When I’ve been in Santa Fe it hasn’t bothered me but when I was I the high Himalayas I felt really awful, though that was much higher.

[BeachLover]

Altitude definitely affects my POTS.  Flying can be challenging, and when my POTS is flared up it makes flying extremely horrible especially due to feeling very anxious during the flights, GI issues, and urinary urgency.  On the occasions I've traveled to a high altitude place such as Colorado my symptoms flared up and I had altitude sickness (e.g, headaches, dizziness, tachycardia, getting winded much more easily).  I do things to try to help myself feel better such as wearing compression stockings, staying hydrated, etc (but when my POTS is flared up it doesn't seem to make much of a difference).  .    

[bombsh3ll]

I actually had the opposite experience with a long flight, although granted I was not staying at a high ground altitude for several days. 

Earlier on in my illness when I was still well enough to travel, I went on an 8 hour flight. The 24 hours after that, I was restored to completely normal health. The same happened following the return journey, so it wasn't a fluke. I have never experienced remission any other time.  

I have heard of one other patient with POTS who experienced the same thing.

My theory is that the mild hypoxia led to reduced renal blood flow (a recognized physiological response), which induced production of renin, & consequently aldosterone, transiently restoring my blood volume to normal or close to normal. 

B xxx

[Pistol]

@bombsh3ll - I read an article stating that flight can improve POTS symptoms b/c the cabin is under-pressurized, therefore causes a different homeostatic environment. I personally suffer from extreme vasoconstriction from POTS and while flying this seems to improve. I do experience severe swelling in the legs while flying, which cn be minimized by using an aisle seat and doing specific foot and leg exercises throughout the flight.  

[Flipflap1]

My symptoms are definitely worse at high altitude, but it's matched by how great I feel psychologically at high altitude, since it's usually a beautiful setting (California mountains, Colorado mountains, etc, you get it...). So, despite the chest pains, shortness of breath, difficulty walking, headaches, I almost always end up enjoying myself and have good memories. I lived at high altitude for 4 months and it took me a good month and a half before I got used to it and my symptoms leveled out. My last short trip in high altitude, my doctors wanted me to increase my medications, but I'm not sure how well it worked. Some days I felt ok but every day I was exhausted by mid day and very symptomatic.  Maybe it would have been worse without the increased meds? Again, I remember that trip fondly, despite the pretty severe symptoms. I think the most important thing is to just try to find things that won't be too uncomfortable, make sure you're with someone who understands you might need to stop or modify your routine. Have fun! Santa Fe is beautiful!

[bombsh3ll]

17 hours ago, Pistol said:

I read an article stating that flight can improve POTS symptoms b/c the cabin is under-pressurized, therefore causes a different homeostatic environment

Thanks, I would be really interested to read about that, do you have a link to it or know the author? It was such a miracle, I would have thought the opposite would occur with flying generally being considered dehydrating! There has to be something, especially given it happened twice with me & several times to the other person I know about.

B xxx

 

 

[Lily]

I spent some time at 7,800 or so feet last summer with 2 other POTSies and 5 non-POTS people.  All the adults got a bit of a headache and were more easily winded than usual for a day or 2, and that was it.  Kids did not seem to be affected at all.

[Mady]

Hi,  thanks for all your responses. I’m not sure how to respond on this message board to anyone in particular. I’m brand new. Despite having POTS  for years. The oxygen problem is caused in part by what’s called a shunt  meaning some malformation in my lungs but I’ve never had a problem until the last couple of years. Now I am in Santa Fe. I have arrived yesterday and my oxygen is going down to 90 or 89. Not sure what to do. My blood pressure remains OK so far. My heart rate is a little high. I have slight headaches but I seem to be pretty OK although Pretty winded. Any suggestion for what to do about the oxygen? Anyone else have shunt long with POTS?

[Flipflap1]

2 hours ago, Mady said:

Hi,  thanks for all your responses. I’m not sure how to respond on this message board to anyone in particular. I’m brand new. Despite having POTS  for years. The oxygen problem is caused in part by what’s called a shunt  meaning some malformation in my lungs but I’ve never had a problem until the last couple of years. Now I am in Santa Fe. I have arrived yesterday and my oxygen is going down to 90 or 89. Not sure what to do. My blood pressure remains OK so far. My heart rate is a little high. I have slight headaches but I seem to be pretty OK although Pretty winded. Any suggestion for what to do about the oxygen? Anyone else have shunt long with POTS?

If you have a good doctor, it would be worth it to call them and ask for some insight. Sometimes insurance companies have a free nurses line you can call as well if a good doctor isn't an option. Your symptoms seem within the norm of high altitude with a headache and being winded, but since you know you've got this shunt issue, and your numbers are off, calling you doctor seems the way to go. I probably should have called mine when I had chest pains in high altitude (or gone to urgent care to make sure it wasn't a serious issue) but I live by way of denial most of the time to avoid being upset about my symptoms. I don't recommend that....! Hang in there and keep your spirits up!

[Random-Symptom Man]

Hi, I’m new to this board and to a dysautonomia diagnosis (pots and sweat, and more tests pending). I live in Colorado at 5280 ft. My spO2% is typically 90-93 at home. When I travel down near sea level, to my specialists, my spO2 is 94-95. At higher altitude (10000 ft), it drops to 88-89. My family and friends don’t usually show this much change.

My syncope tends to be worse up in the mountains. I’ve also gotten what I call fire legs (not sure what that’s called) at altitude several times. It feels like the skin on my legs are burning.

i hope your trip goes well.