Elevation, a problem?

[Aerose91]

As far as I understand, a large basis for our problems are lack of oxygen utilization in outlet mitochondria. Therefore, would staying in higher elevation be detrimental for as long as you are there? I know a person can slowly acclimate to higher elevations but we are a special population and I'm wondering if you do acclimate, is the reduced oxygen still doing damage?

 

[SOC]

As far as I understand, a large basis for our problems are lack of oxygen utilization in outlet mitochondria. Therefore, would staying in higher elevation be detrimental for as long as you are there? I know a person can slowly acclimate to higher elevations but we are a special population and I'm wondering if you do acclimate, is the reduced oxygen still doing damage?

My family lives at high altitude and I always feel better there than at my almost-sea-level home. There was another thread about this earlier this week, but I can't find it. Maybe someone who is sharper than me today can find and link it.

 

[Aerose91]

Thanks SOC, that would be great. I live at 900 ft and am driving out to the desert to do mold avoidance but i can't even get past 3,000 feet. I'm getting severe altitude sickness and there's no way I can drive around the mountains. The altitude is hitting me very badly

 

[SOC]

Thanks SOC, that would be great. I live at 900 ft and am driving out to the desert to do mold avoidance but i can't even get past 3,000 feet. I'm getting severe altitude sickness and there's no way I can drive around the mountains. The altitude is hitting me very badly

I'm sorry to hear that. Some people are prone to altitude sickness, so it may not be an ME thing. Did you get altitude sickness before you had ME? 3000 ft is awfully low to be getting altitude sickness.

The best suggestion I can give you, and it may not be possible with your plans, is to greatly reduce your rate of ascent. As much trouble as you are having, and at such relatively low altitude, it may take weeks for you to acclimatize enough to get across the mountains. Another option is to give up and fly over the mountains if you just can't acclimatize in a reasonable time.

I lived in Colorado Springs (6000+ ft). Everyone who lived there had some story about visiting family members getting altitude sickness at that altitude. It's only a small proportion of people, but not exceedingly rare. People prone to migraines seemed to be at higher risk of altitude sickness. There was some talk about neuroinflammation being a contributing factor, but I have no idea if that's just people's speculation or based in any science. I remember hearing about kids with shunts for draining excess fluid from the brain having more trouble than most, especially not long after shunt-clearing surgery.

Here are some of the common suggestions (popular, not necessarily scientific) for managing altitude sickness that I was told:

• Increase altitude slowly, over days
• Avoid alcohol
• Limit strenuous activity (nothing new for a PWME )
• Hydrate far beyond what you think is necessary. Make sure you drink electrolyte water, not just straight water.
• Don't hesitate to take migraine meds (if you have them) at the first sign of altitude sickness. Aleve (an OTC analgesic) seems to help some people.
• Eat extra carbs
• Avoid tranquilizers and sleeping pills (I have no idea why)

ETA: Another popular story that may or may not have any scientific validity, was that altitude sickness can be worse when a pressure front is going through, so if you can avoid large elevation changes immediately before, during, or immediately after storms, it might help.

 

[Aerose91]

Thanks a lot, SOC

No, I never had trouble with altitude before ME, I even drove through the rockies when I fist got ME and it didn't effect me too much. Now, since I've gotten much worse it's really killing me. I'm considering getting an oxygen tank and just bombing through the mountains as quickly as possible but I'm not sure. Flying may be the only other option. I've never heard of anyone having altitude sickness at this low of an elevation. I am doing all of the other strategies, though

 

[SOC]

I'm considering getting an oxygen tank and just bombing through the mountains as quickly as possible but I'm not sure.

It may not be a strictly oxygen issue, especially if you're feeling it at such low altitude. Obviously, you can try and see if it works, but I'd be very careful about assuming it's going to work and bombing through. You could find yourself at altitude with an ineffective treatment and no easy way to get back to a safe (for you) altitude. It might be wiser to plan to extend your trip to weeks or months to acclimatize slowly, or fly.

 

[Aerose91]

Flying may be my only option, really. I'm shocked how hard it hit me at this low of an altitude. I made it to Fort Collins, CO and had to stop here. I don't have the money to stay here for a while so I have to figure something out.

 

[Mary]

Thanks SOC, that would be great. I live at 900 ft and am driving out to the desert to do mold avoidance but i can't even get past 3,000 feet. I'm getting severe altitude sickness and there's no way I can drive around the mountains. The altitude is hitting me very badly

Before I got sick I was able to go to Mammoth Lakes (7800 feet) with no problem. After I got sick with CFS, I developed altitude sickness for the first time, although it didn't hit me at 3000 feet, I was quite a bit higher, closer to 6000 or 7000 feet, can't remember exactly.

I've read that B12 may help with altitude sickness, and it makes so much sense as we all seem to have so much trouble with B12 utilization. Here's one article with suggestions, including B12: http://www.meetup.com/LASAM-members/pages/Tips_to_Try_for_Altitude_Sickness/

 

[Aerose91]

Before I got sick I was able to go to Mammoth Lakes (7800 feet) with no problem. After I got sick with CFS, I developed altitude sickness for the first time, although it didn't hit me at 3000 feet, I was quite a bit higher, closer to 6000 or 7000 feet, can't remember exactly.

I've read that B12 may help with altitude sickness, and it makes so much sense as we all seem to have so much trouble with B12 utilization. Here's one article with suggestions, including B12: http://www.meetup.com/LASAM-members/pages/Tips_to_Try_for_Altitude_Sickness/

I have been tanking up on NADH and Coq10 and it's helped ever so slightly but not enough to make me think i can take more elevation. I'm holding up at 4,800 feet but there's no way I can go further now. Hopefully I can acclimate here soon. I do take mb12, methyl folate and b complex every day as well

 

[Sushi]

@Aerose91 Once you get acclimatized, my doc has found that about 5000 ft suits most of his patients best. I am at 5000 ft myself and am more comfortable than when I was at sea level--of course I am in an arid climate here and at sea level it was humid, so that is also a big factor.

Good luck with this!

Sushi

 

[Aerose91]

@Aerose91 Once you get acclimatized, my doc has found that about 5000 ft suits most of his patients best. I am at 5000 ft myself and am more comfortable than when I was at sea level--of course I am in an arid climate here and at sea level it was humid, so that is also a big factor.

Good luck with this!

Sushi

Really? So being in slightly less O2 is actually better? That seems weird to me considering mitochondrial respiration is one of our biggest issues. I hope I cam acclimate at least a little bit soon though, I can't get to my destination yet and didn't think I would be hit quite this hard

 

[SOC]

Really? So being in slightly less O2 is actually better? That seems weird to me considering mitochondrial respiration is one of our biggest issues. I hope I cam acclimate at least a little bit soon though, I can't get to my destination yet and didn't think I would be hit quite this hard

I'll say again -- it may not be about O2 at all, and probably not exclusively.

It is just as likely to be a question of how rapidly your body can adjust to air pressure changes. Some people with migraines have trouble with just the rapid, but not extremely large, air pressure changes that occur in weather fronts. Altitude sickness can be the same. Your body simply can't adjust to the air pressure change as rapidly as you are increasing altitude. That's one reason why slow acclimatization sometimes works. It's not necessarily about the magnitude of the pressure change, it's about the how fast it's changing and how fast your body can adapt.

At 3000 ft, there's only about 7% less O2 in the air than at 900 ft. Most people (I know, we aren't most people ) wouldn't notice that. OTOH, there's a 10% change in air pressure, which sensitive people will notice. That's about 3x the air pressure change you would see in a thunderstorm. This is all very roughly speaking, of course.

You might want to do some reading at altitude.org to see if anything there helps you.

 

[Aerose91]

U may be right, SOC. I clawed, bit and dragged my way through but I got out of the elevation. As soon as I crossed under 3200 feet I felt a wave come over me and some of my mental faculties returned and the white haze faded. It was literally instant.
I sucked down a ton of NADH and coq10 during the drive and they definitely helped but I was still struggling to keep conciousness anywhere over 6800 feet. By 7400 i had partial paralysis and was unable to speak any audible words. Now, below 3200 i feel like a lot of things have returned, though I'm still a bit spaced out. After a quick Google search it turns out that brain swelling can occur in certain individuals over 4500 feet. Considering i (and many of us) already have brain inflammation it woukd make sense that I was much more sensitive and susceptible to it.

 

[SOC]

U may be right, SOC. I clawed, bit and dragged my way through but I got out of the elevation. As soon as I crossed under 3200 feet I felt a wave come over me and some of my mental faculties returned and the white haze faded. It was literally instant.

Glad you got through and hope you are feeling much better from here on.

I sucked down a ton of NADH and coq10 during the drive and they definitely helped but I was still struggling to keep conciousness anywhere over 6800 feet. By 7400 i had partial paralysis and was unable to speak any audible words.

I hope you weren't the one driving in the mountains while struggling to maintain consciousness and partially paralyzed! We might have lost you! You are traveling with someone else who can help you when these dangerous situations occur.... aren't you?

After a quick Google search it turns out that brain swelling can occur in certain individuals over 4500 feet. Considering i (and many of us) already have brain inflammation it woukd make sense that I was much more sensitive and susceptible to it.

Yeah, that's what I was trying to tell you, although obviously not clearly enough.

Good luck for the rest of your trip!

 

[Aerose91]

Glad you got through and hope you are feeling much better from here on.

I hope you weren't the one driving in the mountains while struggling to maintain consciousness and partially paralyzed! We might have lost you! You are traveling with someone else who can help you when these dangerous situations occur.... aren't you?


Yeah, that's what I was trying to tell you, although obviously not clearly enough.

Good luck for the rest of your trip!

Thank you for the kind wirds, SOC. I was the one driving, my parents are elderly and none of my friends would have driven me- most of them don't think my illness is a big deal once they heard "chronic fatigue syndrome". When I would get close to passing out I would pull off the road- if I do something that endangers myself that's one thing but I won't endanger other people. I ended up in the hospital with "high altitude cerebral edema" from a few days at merely 4000 feet. I have now ended up in Palm Springs, CA because it's as low as i can get and I know the air quality here is good. Even 1500 feet elevation i notice myself starting to space out and get loopy.
So, this is home now until I heal

 

[Sushi]

I have now ended up in Palm Springs, CA because it's as low as i can get and I know the air quality here is good. Even 1500 feet elevation i notice myself starting to space out and get loopy.
So, this is home now until I heal

You'll have good company in that area, there are many others camping there to escape mold.

Sushi

 

[Aerose91]

You'll have good company in that area, there are many others camping there to escape mold.

Sushi

Thats great to hear. I'm a little concerned about how brutal the summer is going to be but I'll figure something out. Any ideas how others do it?

 

[Ruthie24]

I live at 6000' so always assumed that I was acclimated to elevation, but I certainly have found that since I developed ME I definitely feel a difference once I pass about 3000' of elevation. I tend to feel better at lower altitudes now and when we start the drive to return home, I can literally feel the point at which a lot of my symptoms return.

We've held our family reunion at 9000+' and I never had a problem with it until the last couple of times after I became ill.

 

[Sushi]

I'm a little concerned about how brutal the summer is going to be but I'll figure something out. Any ideas how others do it?

I think they are nomadic and move according the season.

Sushi

 

[Aerose91]

I live at 6000' so always assumed that I was acclimated to elevation, but I certainly have found that since I developed ME I definitely feel a difference once I pass about 3000' of elevation. I tend to feel better at lower altitudes now and when we start the drive to return home, I can literally feel the point at which a lot of my symptoms return.

We've held our family reunion at 9000+' and I never had a problem with it until the last couple of times after I became ill.

It makes sense to think about it. Higher altitudes have less pressure and that will cause higher levels of inflammation. It's also known that mitochondria are less efficient the higher the altitude you go. For me the effect was very, very severe