John Kelseck

Hyperadrenergic POTS and High Altitude 6500+

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I was diagnosed with POTS in 2013, in 2016 I more accurately diagnosed with Hyperadrenergic POTS. I recently visited Pikes Peak Colorado and slept at 6,500ft elevation for 5 days with the highest elevation traveled being 14,115ft . While there I had a dramatic reduction in symptoms. I was also taking Diamox while on the trip. I am curious if anyone with Hyper/pots has had a similar experience with high elevation. 

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This is interesting! I grew up in Colorado and have the opposite problem. I had POTS symptoms since high school. When I went to college in Florida, I had four years of practically no symptoms. I came back after college and passed out within my first week back. If I go up into really high elevation, I am very dizzy and unstable. For a long time prior to being diagnosed, my parents and I simply chalked my symptoms up to being too sensitive to the altitude.

Now I figure it has to do with how easily altitude dehydrates you, plus your heart has to work harder to compensate for thinner air, which combines with the high heart rate and easy dehydration of POTS and exacerbates my symptms. I've never tried the altitude sickness meds, so I wonder how that affects things or if that was a contributing factor in what made you feel great. 

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I find that amazing.  I had strikingly worse symptoms whenever I have been at higher elevation.  It's been awhile but in my past experience I am OK until around 5,000 to 7,000 ft where I notice symptoms.  At 10,000 I have significant symptoms.  I've been at 14,000 ft on two occasions and was pretty much disabled both times. In one case I stayed at that elevation for several days, I was able to adapt after 48 hrs or so, but I definitely need to change elevations slowly and take time to adapt.  But even people not diagnosed with POTS can have difficulty with rapid ascent.

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I find that amazing too. I was in India last year and was thinking of going to the Leh region, which is high altitude, and I didn't go because I thought it would make my hypoadrenergic symptoms worse. Your heart has to work harder to get oxygen when the air is thinner, so I am so surprised you felt better. Maybe it was the medication that made the difference?

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I really cannot say for sure what the contributing factor was. I do know that I started taking the Diamox three days before I left to ensure that I could tolerate the medication. I did not notice any difference at that time but, to be fair, I was not paying any special attention to the relationship of the medication to symptom at that time. I noticed symptomatic relief from the time we landed in Denver to the time I landed in Indianapolis where I became symptomatic almost immediately. As far as the medication works, my understanding is that Diamox raises the acidity of the blood releasing more oxygen into the blood (preventing altitude sickness) and also is a diuretic causing water and salt to be eliminated quicker (causing dehydration). I have read reports of some unconfirmed treatment of Hyper/POTS with this, however, the only actual medical report I could find stated the opposite. I did not have the problem with dehydration as one would normally expect with higher altitude and/or Diamox as I had increased my water intake from 4 liters per day to 6 liters per day a week prior to traveling to prevent dehydration. As far as the thinner air, I currently live at around 1,000 ft elevation, sleeping at 6,500 ft elevation is the equivalent of 90% oxygen where as 14,000 ft was approximately 70% oxygen. I believe the medication balanced the thinner air at sleeping level and causing my heart to not work as hard as it would have normally. I am not sure exactly why I was dramatically less symptomatic. To put it in perspective about one hour of hard physical activity equals 24-48 hrs of incapacitation. While at high altitude I was on my feet 18 hours a day hiking/climbing/swimming without issue and I slept better than I have in 20 years. I will bring up the issue with my POTS Dr. when I see him in December. 

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Hi! I live about 30 minutes outside of Colorado Springs and around 2 hours from Pikes Peak. I find the altitude complicates things for me, the one time we went to sea level I had a marked improvement in symptoms and was able to do more.

I had a friend who lived in Colorado and was so convinced the altitude was her main issue that she moved to sea level on the East coast. Sadly she didn't improve at all and it was all for nothing. 

Pretty amazing that you did better here, is it possible the difference is milder summer/lack of humidity? We know for me if we moved we'd be trading one problem for another as heat is my nemesis, I have horrible temp regulation issues.

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Hello Ancy! My family and I are considering to the Colorado Springs area. One of my fears with this is exactly what happened with your friend, we move and find it was a merely coincidence that I felt better.  I have issues with temperature regulation as well and find high heat and humidity extreme symptom triggers. I realize moving there would not be a cure all, however, if I gained even 10% quality of life increase I think it would be a win. 

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I get that, is there a way you could take another trip to be more sure that it wasn't coincidental? With starting a new medication I'm sure it's hard to be sure. I definitely value the weather here, only a couple weeks of the summer that are a problem. Better than it used to be as we moved outside of town and another almost 2,000 ft in elevation. It's amazing how different the weather can be in just a matter of a few miles. Southern Colorado Springs/Fountain tends to be warmer than the North end. If you do move here feel free to PM me and I'll let you know about some of the Drs in the area. 

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Another visit to the area is definitely warranted. Our plan is to visit again soon without the Diamox and we will get a better idea of how I react to the area. I will absolutely take you up on the Doctor info when we get closer to that point. Currently I see Dr Blair Grubb at the University of Toledo, he was one of the pioneers of vasovagal syncope and the use of the tilt table to diagnose POTS. I will discuss the altitude situation with him, so far from the people I have talked with there have not been any who have had a similar experience,  but as we all know POTS is unpredictable and is a case by case syndrome. 

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Glad to hear you can make another visit, I hope it's helpful. Such a big decision to make I pray God gives you wisdom.

You are certainly correct that each person is a unique case and sometimes what is regarded as problem ends up being a solution. 

I've watched/listened to Dr Grubbs before, glad you have been able to see him. We tried to travel out to see him once but insurance denied it. Interested what his take will be on this.

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Hello, I am new to this forum and just saw your original post.  I had a similar experience. I went to the top of the highest peaks right outside of Denver in 2006 (or 2005). I was surprised my symptoms were better.  There was a big telescope and park up at the top and we did a lot of standing around up there or slow movement while upright which normally would bother me a lot. Then we did a day hike to the next parking area down the mountain. I was with several people who were much more in shape and lived in the area and frequented high elevations.  I was from Missouri, out of shape, and had the POTS symptoms but was not yet diagnosed.  We drove up to the highest point (near some telescope) and then we walked down in elevation on a trail. A friend was going to meet us lower down with his SUV.  So basically it was a half day hike at high elevation.  The guys in shape had very bad headaches and threw up.  Normally I would have been worried about my exercise intolerance.  My POTS symptoms seemed better and I tolerated the hike very well.  

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