RichGotsPots Posted July 7, 2013 Report Share Posted July 7, 2013 I strongly believe that pots breathing problems stem from ganglia small fiber autonomic neuropathy interferring with the central singals from the brain to maintain the proper breathing rhythm. But there may be a component that comes from the Medulla or Hypothalamus (central part of the autonomic nervous system). I know about 2 dozen potsies who have had sleep studies and about half were diagnosed and the other half were not. Which makes me think that not all of our apneas or hypopneas happen while we sleep and that a day time minitor would be helpful for us to catch it. Out of the ones diagnosed who had breathing issues almost everyone had better day time control over breathing. The nighttime cpap and bipaps are helping to retrain the automic system at night and it carries over the day. I also know a handful of ppl who use their device during the day a few hours... My guess is that Hypopnea (reduced breathing) is more common then a full on Apnea (a stop in breathing). Quote Link to comment Share on other sites More sharing options...
Hope Posted July 8, 2013 Report Share Posted July 8, 2013 I had an apnea monitor years ago because I often wake up with a gasp like I haven't been breathing. I was told that it didn't happen often enough in one night to be true apnea. Either way I just figure it has to do with dysautonomia. Same with shortness of breath-"Possible Asthma". I can rarely seem to get a solid diagnosis of my ailments. Quote Link to comment Share on other sites More sharing options...
TCP Posted July 8, 2013 Report Share Posted July 8, 2013 I seem to have about 5 sleep disorders and presently being tested for all of them. Not sure what the outcome will be! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 9, 2013 Author Report Share Posted July 9, 2013 I think it's really tricky to catch this and not sure if an EEG or wakeful apnea study would catch it.. With all the research I read it is so rare to see any studies on our Medulla and Hypothalamus. I will keep you posted. On my research of central hypopnea. I think they are common with illnesses like Parkinson's.. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 9, 2013 Report Share Posted July 9, 2013 I have some breathing problems when I get too anxious. Sometimes, when I'm trying to fall asleep, my breathing would cut off as I relaxed, and I'd have to wake up and breathe. We came to realize that this was anxiety caused by random noises in the house. Could be POTS related though, b/c it felt like any adrenaline rush would create this situation when I relaxed to sleep. Quote Link to comment Share on other sites More sharing options...
gjensen Posted April 29, 2014 Report Share Posted April 29, 2014 I am seeing a pulmonologist about my problems tomorrow. I am most troubled by a transition sleep problem, that I attribute to hypopnea and rising CO2 levels as a result. Then waking up with a breathing pattern to hyperventilation, but not as rapid as I would expect. This same issue can effect me any time during the day, but is most common early or late when I have fully relaxed. This effects me so much with my sleep that I hope I have my worst night ever on the night of the sleep study. I do suspect apnea episodes as well, but not as frequent. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 8, 2014 Author Report Share Posted May 8, 2014 Good luck with your study. I still need one Quote Link to comment Share on other sites More sharing options...
gjensen Posted May 8, 2014 Report Share Posted May 8, 2014 Thanks Rich. I did have the study, but . . . .by the time I got the study, I was out of the flare. It is good that it comes and goes, but bad that it is hard to get help. An apnea meter only caught that my 02 was low at around 90% while I slept. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 12, 2014 Author Report Share Posted May 12, 2014 Interesting. Did the study show anything about your waves? Quote Link to comment Share on other sites More sharing options...
gjensen Posted May 12, 2014 Report Share Posted May 12, 2014 The apnea meter was done by Mayo, separate. A night that I slept well. The sleep study will be discussed with a local pulmonologist tomorrow. I think that she will be my best bet for figuring this out. She understands autonomic dysfunction and is taking me seriously. She also understands this is a come and go problem for me. When I flare again, she will get me right in for another study. This last flare involved me waiting for the referral then the appointment then the study. Too much time passed and it was not caught. She went as far as to do an arterial blood draw before the study and have someone there to draw when I woke up. She wanted to do more than measure CO2 levels during sleep. She believes it is similar to what you mentioned at the beginning of this thread/poll, but not certain exactly what is involved. In short the nerve involvement as a result of the neuropathy is sending faulty signals leading to a reduced breathing drive. Then leading to higher CO2 levels. Supposedly the reason I wake up with the labored breathing. That my body is trying to reduce the CO2 levels, which can lead to hyperventilation and starting the problem all over again. I have these spells when I am awake to, but they are almost always when I am especially relaxed. Either soon after I wake up or in when I am especially tired during the day. My complaint is different than the general shortness of breath that I experience. It is as if a switch is made and I enter another breathing mode altogether. When I am flaring I cannot seam to relax to sleep without entering this pattern. I can go days without real sleep. We are going to try the sleep test again when I flare again. What she wants is to have enough to information to get the insurance company to pay for a BiPap (sp?) with oxygen. She thinks this will help me through the transition and allow me to sleep. I will share the results from the sleep study after tomorrow's appointment. I intend to push this issue until it is resolved. It gives me too much grief not to. When it is bad, it is real bad. Quote Link to comment Share on other sites More sharing options...
LTCBL Posted May 18, 2014 Report Share Posted May 18, 2014 My breathing problems seem to be during the day time when conversing. It could be 5 minutes or 15 and I become winded and leads to some fatigue. My PCP atributes it to respiratory muscle fatigue. Not sure if I can do anythng about this other than be proactive when possible. I have POTS. Quote Link to comment Share on other sites More sharing options...
spinner Posted May 20, 2014 Report Share Posted May 20, 2014 I basically prescribed my own jump from cpap to BIPAP therapy. Modern sleep medicine is not that detailed----ive gotten more help by going tocpaptalk.comThey know more than most sleep docs there.A few of us diagnosed our own bipap. We set our own pressures (which is not illegal but youhave to do carefully).An overlooked problem are THROAT muscles collapsing causing exhilatory vibratory snore. NOTtongue obstruction.Most snoring is caused by EXHALATION not inhalation.A bipap will prevent throat muscle collapse with constant pressure.Honestly, excpet for the mildest case, i'd always consider a bipap to rule out snoring. Centralapnea is less common, but periodic breathing is a problem for many. IN severe cases a VPAP machine can prevent centrals. Quote Link to comment Share on other sites More sharing options...
spinner Posted May 20, 2014 Report Share Posted May 20, 2014 The apnea meter was done by Mayo, separate. A night that I slept well. The sleep study will be discussed with a local pulmonologist tomorrow. I think that she will be my best bet for figuring this out. She understands autonomic dysfunction and is taking me seriously. She also understands this is a come and go problem for me. When I flare again, she will get me right in for another study. This last flare involved me waiting for the referral then the appointment then the study. Too much time passed and it was not caught. She went as far as to do an arterial blood draw before the study and have someone there to draw when I woke up. She wanted to do more than measure CO2 levels during sleep. She believes it is similar to what you mentioned at the beginning of this thread/poll, but not certain exactly what is involved. In short the nerve involvement as a result of the neuropathy is sending faulty signals leading to a reduced breathing drive. Then leading to higher CO2 levels. Supposedly the reason I wake up with the labored breathing. That my body is trying to reduce the CO2 levels, which can lead to hyperventilation and starting the problem all over again. I have these spells when I am awake to, but they are almost always when I am especially relaxed. Either soon after I wake up or in when I am especially tired during the day. My complaint is different than the general shortness of breath that I experience. It is as if a switch is made and I enter another breathing mode altogether. When I am flaring I cannot seam to relax to sleep without entering this pattern. I can go days without real sleep. We are going to try the sleep test again when I flare again. What she wants is to have enough to information to get the insurance company to pay for a BiPap (sp?) with oxygen. She thinks this will help me through the transition and allow me to sleep. I will share the results from the sleep study after tomorrow's appointment. I intend to push this issue until it is resolved. It gives me too much grief not to. When it is bad, it is real bad.Very sorry youre dealing with this. You are not alone.Worst case scenario you can buy your own bipap on craigs or elsewhere. cpaptalk.com is the best resource forsuch an emergency.Sleep tests are expensive and dont always reveal whats happening in one night. Many people have no other optionbut to learn how to treat themselves quite frankly. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted September 7, 2014 Author Report Share Posted September 7, 2014 Gjensen- any updates? Quote Link to comment Share on other sites More sharing options...
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