03-17-2025, 09:02 PM
(This post was last modified: 03-17-2025, 09:04 PM by 1950ehamilton.)
New and Struggling
I am new to this process. I am new to PAP and what that entails. I need advice.
First some history. I am a retired engineer. That might be part of the problem.
I woke up with a peculiar headache about 8 months ago. This prompted me to buy a recording pulse oximeter. What I saw bothered me. I was often in the low 80% range. Whether it was a rational concern or not I sought a fix. Without a sleep study I bought a low hours Resmed Airsense 10 Autoset on Craigslist. It came with numerous mask options. It did not produce the desired results. It made my O2 levels worse. I then got a referral to a sleep lab. The results are attached. I have mostly central apneas. I was prescribed. 6-16 cm/H2O with no EPR in APAP. My appointment with the DME was out a month and I already owned a machine so I entered the prescription and started using it. I was startled at how much worse my O2 levels got. Looking back I now understand how high pressure can make central apneas worse. Thinking it might help me trigger breaths I bought a 0 hours Resmed Aircurve 10 ST on Craigslist at a very low price. There was a lot to learn and I fumbled a bit on the internet looking for information.
I realized I was in over my head and called the Sleep center and complained that although it may be irrational I felt like the machine was trying to kill me. I actually asked if these machines had killed people and never got a straight answer. I then got the call from the DME. I showed up with the wrong machine. They legally could not give me advice on the settings but reported me to the sleep lab. When I got the call from the sleep lab I thought it was in response to my request for help; but, I soon realized I was a bad person and in trouble. At the appointment when told how I had done so much wrong, I said that if it was protocol that I had to spend 30 + 1 days with CPAP I would do it. At that point the doctor said that we could not go back to that because I had broken his trust. WTF. This is the doctor that, before the study had walked around his desk to confront me and bet me his truck that I did not have central sleep apnea. I had never awakened up gasping for air and often forgot to breath when falling asleep. He said that if he came back with a diagnosis of obstructive sleep apnea I had to promise to abide by his recommendations. I took that conditional statement too specifically. He obviously meant it generally. At our next meeting he also stated that 90% of all central sleep apneas resolve with CPAP. If that is true, I have not seen the proof of that statement. I agreed to a titration sleep study but the more I thought about the whole process, the more aggravated I got and eventually I called back and canceled the titration sleep study.
I have attached a spreadsheet with 2.5 months of data. They are in SleepHQ also. Sorry I found their site first. I could load them in OSCAR. Unfortunately neither of my two pulse oximeters is compatible with either and I have been reluctant to buy another. I have not included the first month's trials. After I bought the second machine I went to sell the first and erased the SD card. I should not have done that. I still own it.
I then started with low pressures to get familiar with the masks and adapt to the process while increasing the pressure. When I started having issues I started experimenting with re-breathing I get fair results on CPAP with a re-breathing volume of 100-110 cc's and a pressure in the 13-14 cm range. But sometimes it goes poorly. Those poor nights might be related to consuming dark chocolate.
I soon became aware that I should have purchased an ASV machine. It took a week or so to find a low hours, very low priced, Resmed Aircurve 10 ASV on Craigslist. I ran into trouble with the ASV. I need to regress again before explaining that.
Several years ago I developed a right bundle branch block and arrhythmias and palpitaions. It was difficult to get into a cardiologist during covid. I thought I might have been experiencing myocarditis from the covid vaccine but I am far far too old for that. When I did get an appointment, and then a nuclear stress test, it was inconclusive and my ejection fraction was 0.67. I have imagined that I had a small heart attack that was too small for the nuclear imaging to see. I declined further tests. Over time the RBBB improved and arrhythmias diminished to near pre-incident levels, but I was sensitive to theobromine and tyramine (dark chocolate and aged cheese). I have had PVC's in the 1-2% range all my life but after the incident eating the wrong stuff could push the PVC's to 30%. Generally these are not treated until near the 50% mark and this was easily manageable by avoiding the wrong foods. However, after a couple years the RBBB and arrhythmias returned firmly. This prompted me to get a calcium score on my heart. That resulted in a prescription for Atorvastatin. Peculiarly, within 2 weeks the arrhythmias went away even when consuming the foods I used to avoid. I work out vigorously on an elliptical and at a gym. I have often taken my heart rate to max for my age range. After taking the statin drug, my max heart rate at the same RPM and resistance on the elliptical dropped almost 10 BPM. This is not unheard of but not common. I have not been diagnosed with any heart condition, other than mild/high atherosclerosis at one spot (my GP called it the widowmaker, anterior decending aretery, calcium score 85); but, I have not asked many questions or had an angiogram. My cholesterol total is now around 110. I am more active than average for my age.
Okay. When I tried to use the Resmed Aircurve 10 ASV with the usual recommended pressure ranges for ASVauto it would spend a lot of time at 25 cm. A lot of this happened when I was awake. I was usually awake half the nights when trying this. I was not really aware of the pressure but I was obviously hyperventilating. I then tried ASV with EPAP fixed and limited the Pressure support. It would often max out at whatever I allowed. At the end I tried EPAP 13 and PS 0.2-5.2cm. That may have been a mistake. This is in the date range from Feb 17 to Feb 23 in sleephq. On Feb 24 on the elliptical my polar heart rate monitor spiked from near 150 to 188 and then came back down in steps. After the exercise my Kardia ecg confirmed an irregular ECG. Thinking back I recalled waking with a minor discomfort in my back that was probably mild angina. I drank a Pedialyte Sport and the arrhythmias diminished within an hour. It was two days and another electrolyte drink before I could do a hard workout without issues. Clearly, I think, I hyperventilated and developed respiratory alkalosis with electrolyte abnormalities. Also, while using ASV, my AHI was near zero, but my blood oxygen had more drops than typical.
Here is my question. What settings and breathing techniques should I use with ASV to reduce hyperventilation? I would lay in bed until my pulse was down to 60 before starting the machine. Should I consider that I am a person for whom ASV should not be used? Apparently this sequence has been fatal in CHF patients with low ejection fractions.
I have considered the bilevel at higher pressures but that seems burdensome when I only need help for about 15 minutes or so each night.
I will include a link to all of my sleephq. I have a attached a spreadsheet with my O2 vitals. Sorry about the extra step. I have attached the sleep study.
I have a strategically trimmed beard. My current mask set up is the Phillips respironics dreamwear with small nasal pillows. To control mouth leaks I am using two layers of ckeep kinesiology tape and a chin strap. I have plugged the mask vents and the elbow vents. I have drilled vent holes in tubing about 2 inches from the elbow. The vented tubing is reversible to move the vents about 4 inches from the top elbow. Since I am sealed so tightly I put a check valve next to the vent holes that vents to the atmosphere should the electricity fail. Looking at my leak rate it may be argued that I should have a little more venting than I am currently using. I filled the mask and tubing to the vent holes and poured into a measuring cup. The volume is right at 100 cc when 2 inches from the elbow.
I am waiting for another sleep lab, but that is months out at this time.
Sorry I cannot add PDF files and links yet. I will try to add the sleep study and sleephq link later. This is a problem. The pictures of the spreadsheet are the best I can do at the moment.
Ernie
Here are jpegs of the sleep study.
Ernie
First some history. I am a retired engineer. That might be part of the problem.
I woke up with a peculiar headache about 8 months ago. This prompted me to buy a recording pulse oximeter. What I saw bothered me. I was often in the low 80% range. Whether it was a rational concern or not I sought a fix. Without a sleep study I bought a low hours Resmed Airsense 10 Autoset on Craigslist. It came with numerous mask options. It did not produce the desired results. It made my O2 levels worse. I then got a referral to a sleep lab. The results are attached. I have mostly central apneas. I was prescribed. 6-16 cm/H2O with no EPR in APAP. My appointment with the DME was out a month and I already owned a machine so I entered the prescription and started using it. I was startled at how much worse my O2 levels got. Looking back I now understand how high pressure can make central apneas worse. Thinking it might help me trigger breaths I bought a 0 hours Resmed Aircurve 10 ST on Craigslist at a very low price. There was a lot to learn and I fumbled a bit on the internet looking for information.
I realized I was in over my head and called the Sleep center and complained that although it may be irrational I felt like the machine was trying to kill me. I actually asked if these machines had killed people and never got a straight answer. I then got the call from the DME. I showed up with the wrong machine. They legally could not give me advice on the settings but reported me to the sleep lab. When I got the call from the sleep lab I thought it was in response to my request for help; but, I soon realized I was a bad person and in trouble. At the appointment when told how I had done so much wrong, I said that if it was protocol that I had to spend 30 + 1 days with CPAP I would do it. At that point the doctor said that we could not go back to that because I had broken his trust. WTF. This is the doctor that, before the study had walked around his desk to confront me and bet me his truck that I did not have central sleep apnea. I had never awakened up gasping for air and often forgot to breath when falling asleep. He said that if he came back with a diagnosis of obstructive sleep apnea I had to promise to abide by his recommendations. I took that conditional statement too specifically. He obviously meant it generally. At our next meeting he also stated that 90% of all central sleep apneas resolve with CPAP. If that is true, I have not seen the proof of that statement. I agreed to a titration sleep study but the more I thought about the whole process, the more aggravated I got and eventually I called back and canceled the titration sleep study.
I have attached a spreadsheet with 2.5 months of data. They are in SleepHQ also. Sorry I found their site first. I could load them in OSCAR. Unfortunately neither of my two pulse oximeters is compatible with either and I have been reluctant to buy another. I have not included the first month's trials. After I bought the second machine I went to sell the first and erased the SD card. I should not have done that. I still own it.
I then started with low pressures to get familiar with the masks and adapt to the process while increasing the pressure. When I started having issues I started experimenting with re-breathing I get fair results on CPAP with a re-breathing volume of 100-110 cc's and a pressure in the 13-14 cm range. But sometimes it goes poorly. Those poor nights might be related to consuming dark chocolate.
I soon became aware that I should have purchased an ASV machine. It took a week or so to find a low hours, very low priced, Resmed Aircurve 10 ASV on Craigslist. I ran into trouble with the ASV. I need to regress again before explaining that.
Several years ago I developed a right bundle branch block and arrhythmias and palpitaions. It was difficult to get into a cardiologist during covid. I thought I might have been experiencing myocarditis from the covid vaccine but I am far far too old for that. When I did get an appointment, and then a nuclear stress test, it was inconclusive and my ejection fraction was 0.67. I have imagined that I had a small heart attack that was too small for the nuclear imaging to see. I declined further tests. Over time the RBBB improved and arrhythmias diminished to near pre-incident levels, but I was sensitive to theobromine and tyramine (dark chocolate and aged cheese). I have had PVC's in the 1-2% range all my life but after the incident eating the wrong stuff could push the PVC's to 30%. Generally these are not treated until near the 50% mark and this was easily manageable by avoiding the wrong foods. However, after a couple years the RBBB and arrhythmias returned firmly. This prompted me to get a calcium score on my heart. That resulted in a prescription for Atorvastatin. Peculiarly, within 2 weeks the arrhythmias went away even when consuming the foods I used to avoid. I work out vigorously on an elliptical and at a gym. I have often taken my heart rate to max for my age range. After taking the statin drug, my max heart rate at the same RPM and resistance on the elliptical dropped almost 10 BPM. This is not unheard of but not common. I have not been diagnosed with any heart condition, other than mild/high atherosclerosis at one spot (my GP called it the widowmaker, anterior decending aretery, calcium score 85); but, I have not asked many questions or had an angiogram. My cholesterol total is now around 110. I am more active than average for my age.
Okay. When I tried to use the Resmed Aircurve 10 ASV with the usual recommended pressure ranges for ASVauto it would spend a lot of time at 25 cm. A lot of this happened when I was awake. I was usually awake half the nights when trying this. I was not really aware of the pressure but I was obviously hyperventilating. I then tried ASV with EPAP fixed and limited the Pressure support. It would often max out at whatever I allowed. At the end I tried EPAP 13 and PS 0.2-5.2cm. That may have been a mistake. This is in the date range from Feb 17 to Feb 23 in sleephq. On Feb 24 on the elliptical my polar heart rate monitor spiked from near 150 to 188 and then came back down in steps. After the exercise my Kardia ecg confirmed an irregular ECG. Thinking back I recalled waking with a minor discomfort in my back that was probably mild angina. I drank a Pedialyte Sport and the arrhythmias diminished within an hour. It was two days and another electrolyte drink before I could do a hard workout without issues. Clearly, I think, I hyperventilated and developed respiratory alkalosis with electrolyte abnormalities. Also, while using ASV, my AHI was near zero, but my blood oxygen had more drops than typical.
Here is my question. What settings and breathing techniques should I use with ASV to reduce hyperventilation? I would lay in bed until my pulse was down to 60 before starting the machine. Should I consider that I am a person for whom ASV should not be used? Apparently this sequence has been fatal in CHF patients with low ejection fractions.
I have considered the bilevel at higher pressures but that seems burdensome when I only need help for about 15 minutes or so each night.
I will include a link to all of my sleephq. I have a attached a spreadsheet with my O2 vitals. Sorry about the extra step. I have attached the sleep study.
I have a strategically trimmed beard. My current mask set up is the Phillips respironics dreamwear with small nasal pillows. To control mouth leaks I am using two layers of ckeep kinesiology tape and a chin strap. I have plugged the mask vents and the elbow vents. I have drilled vent holes in tubing about 2 inches from the elbow. The vented tubing is reversible to move the vents about 4 inches from the top elbow. Since I am sealed so tightly I put a check valve next to the vent holes that vents to the atmosphere should the electricity fail. Looking at my leak rate it may be argued that I should have a little more venting than I am currently using. I filled the mask and tubing to the vent holes and poured into a measuring cup. The volume is right at 100 cc when 2 inches from the elbow.
I am waiting for another sleep lab, but that is months out at this time.
Sorry I cannot add PDF files and links yet. I will try to add the sleep study and sleephq link later. This is a problem. The pictures of the spreadsheet are the best I can do at the moment.
Ernie
Here are jpegs of the sleep study.
Ernie
