brownsea Posted September 22, 2010 Report Share Posted September 22, 2010 currently suffering with the same problem, so much so im using a wheelchair to get around outside the house.ive been experiencing being severly out of breathe coming up for three years now. i was diagnosed with Pots last may, eds 3 this may (just had the skin biopsy to rule out eds 4). the cardiologist wants me to have a ct scan to check the heart and lungs, and an exercise test, even if i can manage only a minute to see what the possible problem could be, oh and also an injection that will speed my heart up. sorry i dont remember the names of the tests very foggy at present. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 22, 2010 Report Share Posted September 22, 2010 I was thinking about what y'all are talking about regarding the CO2 abnormalities. It's been 25 years since I took all my physiology courses in college, so don't grasp as easily as I did then(thanks POTS ). I get the feeling that none of us really have any lung diseases/major issues OR any renal disease/impairments. Based on this assumption, then our CO2 whackiness is not really due to respiratory problems, but more of an acid/base problem. What results is our whacky breathing issues as our body tries to overcome the pH issue via respiration. Believe me, I may be way off base here, but would still like to bring it up, as I feel we keep finding more puzzle pieces the more we "think" collectively.I am pasting something I was reading about metabolic acidosis:http://fitsweb.uchc.edu/student/selectives/TimurGraham/Physiologic_effects.htmlIf you read all the effects of it, you can see where we go through that on a daily basis. And look at all the vasodilation/vasoconstriction problems it causes!!! That so applies to us!!! So the question is, IF this is an acid/base problem, what is contributing to it? My brain is so not good at comprehending what belies all the possibilities. Another site I read up on about acid/base describes alot of things that could be going on as far as disease/illness contributors, but I wouldn't know where to begin. What kind of doctor investigates acid/base balances?? Quote Link to comment Share on other sites More sharing options...
erik Posted September 23, 2010 Report Share Posted September 23, 2010 Based on this assumption, then our CO2 whackiness is not really due to respiratory problems, but more of an acid/base problem. What results is our whacky breathing issues as our body tries to overcome the pH issue via respiration. Believe me, I may be way off base here, but would still like to bring it up, as I feel we keep finding more puzzle pieces the more we "think" collectively.I have read that respiration is the short-term means of maintaining acid-base balance, and kidneys are long-term. Increased respiration eliminates more CO2 and thereby pushes blood more alkaline. Excess CO2 is the main "drive to breath" factor (a person will pass out from low oxygen before feeling much need to breath). IRRC, CO2 / acid-base levels, like temperature & other key autonomic senses, are measured in the hypothalmus. A mis-calibration or mis-response to these signals seems consistent with some of our general tendencies.I also vaguely recall that the kidney happens to do it's acid-base balance in a way that happens to affect blood volume, but I don't recall the specifics. The right circumstance could perhaps account for "shortness of breath" (an impetus to clear more CO2... aka, counter acidity), tendency to low blood volume (if the long term acid-base work of kidney happens to contradict blood volume sustaining activity).Also, note that acidity apparently alters potassium concentrations. As pH falls (more acidic), serum potassium will tend to go up. But for most folks, there isn't a persistent acid-base imbalance... instead a compensation is made (which means the problem could "pop out" elsewhere).Lactic acidosis is said to occur from hypoxia/hypoperfusion (shortage of blood/oxygen) to tissues. Hypoperfusion seems endemic to POTS, for one. Who knows, maybe this sets up a low-grade tendency toward lactic acidosis... and the compensations (usually successful) push the symptoms into shortness-of-breath and low-blood-volume for some. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted September 23, 2010 Author Report Share Posted September 23, 2010 Thanks for everyone's responses to my original post. We spoke with my POTS cardiologist yesterday who believes I have metabolic acidosis, though this has yet to be proven. My venous CO2 and pH have been mid range normal. The only definitive way to check for this would be an arterial blood gas. Other ideas would be drawing lactic acid and pyruvic acid samples. He mentioned supplemental oxygen therapy, which I am poo-pooing right now. I still think the high CO2 expiration is the result of autonomic dysfunction and not the cause. Plus, everything immediately is equalized once I start exercising. After reviewing the symptoms and causes of metabolic acidosis, I believe IF this is actually transpiring, the acidosis must be mild. Erik, my thoughts are the same. I hypothesize that lactic acidosis would be the consequence of chronic hypoxia/ hypoperfusion. I agree that there appears to be a major miscalibration, and the hypothalamus needs a re-boot. Thank you for the link, sue. I am reviewing it. I believe a pulmonologist with a metabolic speciality would be the best source regarding acid/ base disturbance. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 23, 2010 Report Share Posted September 23, 2010 My PT and I did some research about two months ago and we have a similar theory. For me, the anaerobic threshold is extremely low, so as soon as I get my HR up beyond 130ish I move into the anaerobic zone. The sticky part is that to increase respiration, my brain then gets over oxygenated, despite the muscles working anaerobically and the brain then shuts things (like eyesight) down with vasoconstriction because it thinks that I am hyperventilating. The only way that I can move without parts just quitting is to control my breathing....basically taking one breath for everyone else's two or three. My O2 turnover is very high due to high hematocrit/RBC and my labs are always high for serum CO2 and chloride. It is a nasty cycle for me and it only makes sense on certain days (today NOT being one of them.....sorry if this made no sense.) Quote Link to comment Share on other sites More sharing options...
McBlonde Posted September 23, 2010 Report Share Posted September 23, 2010 I don't really understand all this, but I did want to chime in and say that I, too, have low aldosterone and low renin and I just caught myself holding my breath when I was walking. I didn't even realize I was doing it. Weird. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 23, 2010 Report Share Posted September 23, 2010 This is interesting. I think I am going to try to do a poll(never have, hope it works!). There are probably quite a few people that have never had their aldosterone/renin checked. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted September 24, 2010 Author Report Share Posted September 24, 2010 Firewatcher-What you describe happening when you exercise, is exactly what happens to me at rest. Then, I start to exercise, and my CO2 expiration normalizes. We are going to start the search for a pulmonologist with an interest in metabolic issues, as suggested by the cardiologist. I'll let everyone know if he/ she can make heads or tails of the results or explain how this is related to dysautonomia. I read Stewart's article on hypocapnia, but I don't think hypocapnia necessarily equals high respiratory quotient. Stewart measured PetCO2 as a measure of hypocapnia. My PetCO2 was normal, but my respiratory quotient was high from increased CO2 expiration. I am out of my league in this area, as is the POTS cardiologist I see, so I need more clarification. Sue and McBlonde,I know we share many of the same symptoms, so I am curious if we have the same root issue. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted September 24, 2010 Report Share Posted September 24, 2010 Firewatcher-What you describe happening when you exercise, is exactly what happens to me at rest. Then, I start to exercise, and my CO2 expiration normalizes. We are going to start the search for a pulmonologist with an interest in metabolic issues, as suggested by the cardiologist. I'll let everyone know if he/ she can make heads or tails of the results or explain how this is related to dysautonomia. I read Stewart's article on hypocapnia, but I don't think hypocapnia necessarily equals high respiratory quotient. Stewart measured PetCO2 as a measure of hypocapnia. My PetCO2 was normal, but my respiratory quotient was high from increased CO2 expiration. I am out of my league in this area, as is the POTS cardiologist I see, so I need more clarification. Sue and McBlonde,I know we share many of the same symptoms, so I am curious if we have the same root issue.I was 3 years old the first time I fainted, so I am thinking it was something I was born with that causes the messages to not be sent correctly, so much so, that the messed up messages eventually involved my pituitary, my adrenal gland and my kidneys. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 24, 2010 Report Share Posted September 24, 2010 Yes, definitely keep us up to date on your what your new doctors say! Quote Link to comment Share on other sites More sharing options...
issie Posted April 8, 2013 Report Share Posted April 8, 2013 Interesting discussion. I was just talking to someone about possible issues with CO2 and O2 while sleeping and maybe it causing someone to wake up with an adrenal surge. I use a CPAP and have to sometimes use oxygen. Possible the issues with my brain telling me to breathe (or not) causing an increase in CO2 and less oxygen to the brain. I was reading something from Depok Chopra and he said we don't need to breathe more when this happens - but breathe less. When we hyperventilate - it will cause a reaction that will not allow the oxygen to be uptaken properly. Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 10, 2013 Report Share Posted April 10, 2013 Looking at the early comments on this thread also makes me think of the ME/CFS research that shows that these patients have much lower anaerobic thresholds than normal people. Makes you wonder, given how much overlap there seems to be between the two populations (POTS and ME/CFS) if a lot of us don't live on the edge of being anaerobic (even at rest) much of the time. Quote Link to comment Share on other sites More sharing options...
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