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(05-02-2023, 02:00 PM)cmpman1974 Wrote: So you have a doctor that is recommending supplemental O2 when you have perfectly good noctural O2 stats as well as normal daytime O2 stats? You said before 96-97% without any additional O2 at night. You should NOT be on O2 at all if you had normal numbers day and night as I said before. Yes, excess O2 certainly can cause issues. I thought you were off of it. Your AHI is pretty well controlled night to night. Yes there seems to be a mix of Central Apneas and Hypopneas and such that vary, but your overall totals fall within a pretty good range per hour.
It is hard to believe a physician would recommend that if there's no verifiable proof. I've battled endlessly and I actually do have low numbers at night!
I am not at all questioning the fact that you feel poorly and are struggling. I just don't see any doctors ever agreeable to treatments that don't make sense based on test results. That's the part that blows my mind. Doctors aren't usually willing to write scripts for any machine someone wants, supplemental O2 when you don't meet any criteria, etc.
I think my neuro was just trying to help me get used to it. I don't use actual bottled O2, I use an O2 concentrator at the extreme lowest setting, like 1 liter a minute. My O2 never goes above 98% even on that.
My neuro is finally listening to me because what I had on my original test was hypopneas and not obstructive apneas. My obstructives were almost within the normal range. But I had many hypopneas that seemed to be the result of weak breathing effort - I had the test with the abdominal band, and that's what registered the hypopneas. Not quite shallow enough to be centrals but...definitely hypopneas.
I did find something on my Wellue that I am wondering about. On the Wellue I seem to be moving around all over the place when I sleep. What is causing that, I wonder? I have a feeling that the BIPAP is badly disrupting my natural breathing pattern (or unnatural). What the heck do I do to fix this? I'm having great nights on paper, but I feel so bad in the morning. And yes, I do have something else going on, but my fatigue was NEVER this bad until I started BIPAP.
05-02-2023, 07:10 PM (This post was last modified: 05-02-2023, 07:13 PM by cmpman1974.)
RE: Sorry to start new thread but need nap
(05-02-2023, 02:45 PM)Morgannon Wrote: I think my neuro was just trying to help me get used to it. I don't use actual bottled O2, I use an O2 concentrator at the extreme lowest setting, like 1 liter a minute. My O2 never goes above 98% even on that.
My neuro is finally listening to me because what I had on my original test was hypopneas and not obstructive apneas. My obstructives were almost within the normal range. But I had many hypopneas that seemed to be the result of weak breathing effort - I had the test with the abdominal band, and that's what registered the hypopneas. Not quite shallow enough to be centrals but...definitely hypopneas.
I did find something on my Wellue that I am wondering about. On the Wellue I seem to be moving around all over the place when I sleep. What is causing that, I wonder? I have a feeling that the BIPAP is badly disrupting my natural breathing pattern (or unnatural). What the heck do I do to fix this? I'm having great nights on paper, but I feel so bad in the morning. And yes, I do have something else going on, but my fatigue was NEVER this bad until I started BIPAP.
Regarding the movement on the Wellue, the only way to know is to put up a night time video camera to record sleep as I've done. Wyze cameras work well for that. No one can tell you why you move around in your sleep if you do. Hopefully a camera may give you better perspective on what's happening and to what degree. It's a pretty cheap investment, around $35. I recommend the Wyze Camera V3.
I always thought sleep apnea is a combination of apnea events and hypopnea events combined. Some docs considered RERAs and others not as much. What is making you think hypopneas fall outside the realm of a sleep breathing disorder and separately classified? I would guess all data needs to be factored in by your medical team as we keep saying. This includes pulmonary function tests, neuro testing, other possible medical conditions, etc. Hypopneas are treated with a CPAP/BPAP so you are getting treatment for them and surely controlling them well given the AHI reported. Your upcoming sleep study should give you even better perspective probably.
If able to post a redacted copy of your last sleep study, maybe it would provide more perspective. It's likely almost all of us here experience both apneas and hypopneas in some form. Hypopneas are the pre-cursor to full blow apneas.
Based on posts here, it's apparent there is a large number of people who don't feel rested despite appropriate CPAP/BPAP therapy. Maybe damage is permanent or effects very long lasting and difficult to reverse. It's a pretty bleak view when I step back and read things here. I have to keep the hope treating sleep apnea has benefits we can't see even if totally disappointed in the physical improvements obtained.
My o2 dropped into the mid nineties awake. Sign of diaphragm weakness. Or worsening COPD which I don't seem to have. Who knows at this point. Not my doctors, they are writing everything off as anxiety.
Good idea on the camera. Going to video myself sleeping tonight with my iPhone. Maybe it will provide some insight.
I think there's a serious problem if the BIPAP and CpAP therapy is getting poor results like we read about. I personally think the apnea therapy is too disruptive for many people. And those of us who have had apnea for a long time seem to have adapted to it. Are we further damaging ourselves trying to reverse it? That's my theory at least.
I also think the body has to adjust to a lower than normal CO2 level in the blood. And adjust the delicate balance of acids and bases in the body. I'm hoping that is what is going on, at least. If I wasn't so worried about a neuro breathing issue I would stop therapy tonight and consequences be damned. As it is I now use my BIPAP as a ventilator. And I wonder if using the BIPAP is weakening the diaphragm.
Wouldn't that be something if we were all weakening our diaphragms by using these devices?
I personally think that the vast majority of mild to moderate cases of sleep apnea could be treated medically with Mestinon or similar agents. There was a small study done that needs to become a bigger study:
05-02-2023, 10:25 PM (This post was last modified: 05-02-2023, 10:45 PM by cmpman1974.)
RE: Sorry to start new thread but need nap
I have had mid 90s awake for 15+ years. You know how many docs were concerned? ZERO. Where did you ever read this indicates diaphragm weakness? Yes athletic people will have high SPO2 more than likely. You said your BMI is 35 so why do you think it'll be high 90s? My BMI is higher than that for sure so I'm not trying to poke fun at all, but making a point. Sometimes we expect miracles from treatment and neglect the fact we can generally be unhealthy with many other issues. Unhealthy people are not going to be feel like a million bucks by knocking 1 of 15 issues to the curb. If that's one's only issue, the odds go up of substantial improvement, but how often is that reality?
You need to somehow find a medical professional you trust and try to follow them. The number of theories seems to multiply weekly. It's easy to let our minds race. People with 550+ Vts are not using their machines as a ventilator at a 13/7 avg pressure! Our muscles lose all tone in REM sleep so how on earth are we weakening our breathing muscles by being on PAP treatment? I know REM is usually 17-25% of sleep so there is other stages, but I still struggle to buy into it as sleep is a subconscious state in general. Sleep apnea is predominantly an obstructive disease outside of central apneas (brain-related). Our upper airway literally collapses with OSA. It's not weak muscles per se.
The choice is always yours regarding proceeding with your PAP treatment, but I certainly refrain from suggesting it. That's a conversation to be having with your medical team. I am not sure if there's any medical basis for the weakening of muscles using these machines, but run it across your sleep specialist.
Maybe someone else has more to say on the topic? I do know suggesting people may benefit from discontinuing their PAP treatment certainly could put people in an early grave. The risks are substantial. Again with the CO2 issue.....no proof. Need to stop thinking and get testing to prove/disprove the theories. If the medical docs will consider it, then by all means try to get answers. That's the best anyone can do.
I will look at the article posted about Mestinon. I was not familiar with that idea. I do know of the drug though generally. That publication is very brief and provides no clarity on the characteristics of the populated that were tested. It would be interesting. That's probably available in the full write-up. From what a neuro told me 20+ years ago, the drug would have little positive impact if not a MG patient.
My o2 has been 98% and 99% for the last fifty two years. It only started dropping when I started having diaphragm weakness. And I'm lighter than I used to be
OK here is one of the first nights on my new IVAPS. It destroys apneas like a charm. But it feels like a lot of pressure. And since we don't know what the f**k we are treating I'm hoping someone can recognize a pattern in my data. I noticed that the device has to chip in a lot of pressure a lot of the time, and there are ups and downs. I know I don't present like a traditional neuromuscular patient, but the disease(s) I am being evaluated for cause temporary weakness then recovery, then weakness then recovery. Is this the pattern I am seeing? It this a pattern anyone else is seeing? I can't explain why the pressure required fluctuates so much.
(05-21-2023, 08:42 PM)Morgannon Wrote: OK here is one of the first nights on my new IVAPS. It destroys apneas like a charm. But it feels like a lot of pressure. And since we don't know what the f**k we are treating I'm hoping someone can recognize a pattern in my data. I noticed that the device has to chip in a lot of pressure a lot of the time, and there are ups and downs. I know I don't present like a traditional neuromuscular patient, but the disease(s) I am being evaluated for cause temporary weakness then recovery, then weakness then recovery. Is this the pattern I am seeing? It this a pattern anyone else is seeing? I can't explain why the pressure required fluctuates so much.
Morgannon
You are experiencing the fun of the machine trying endlessly to meet a specific Tidal Volume, though I don't know what that is as not all info is shown on the OSCAR screen shot. What is your back-up rate in mL? Can you clarify your starting IPAP and PS min/max. Sometimes the print-out shows parameters that don't truly get applied I noticed in my own case.
You are right, AHI was lower for me too on IVAPS, but the sacrifice of 1-2 AHI per hr wasn't worth the discomfort at all. it all depends on why the machine is needed of course. How do you FEEL when you wake up now? I notice the hours of sleep still are a pretty crazy amount (12+ hrs).
Hey CPAPman! Ironically last night I had four events per hour, poor o2 saturation, and I felt more energetic than I have in weeks.
Let me check my settings brb...
Tidal volume 525 (I feel like this is way too low for a big guy like me). EPAP 6.0 Min PS 6.0 Max PS 20.
It's upsetting as hell because for my size the ideal weight is something like 165 pounds or 75 kilograms. The middle of the road tidal volume is something like 7 x 75 or 525 ml. So I'm feeling a little air starved.
Can you tell me why I have such a wierd oscillating pattern? It's like I do fine sometimes and then get weak and the machine kicks in and then I do fine for a while and then the machine kicks in.
05-21-2023, 11:33 PM (This post was last modified: 05-21-2023, 11:39 PM by cmpman1974.)
RE: Sorry to start new thread but need nap
(05-21-2023, 09:59 PM)Morgannon Wrote: Hey CPAPman! Ironically last night I had four events per hour, poor o2 saturation, and I felt more energetic than I have in weeks.
Let me check my settings brb...
Tidal volume 525 (I feel like this is way too low for a big guy like me). EPAP 6.0 Min PS 6.0 Max PS 20.
It's upsetting as hell because for my size the ideal weight is something like 165 pounds or 75 kilograms. The middle of the road tidal volume is something like 7 x 75 or 525 ml. So I'm feeling a little air starved.
Can you tell me why I have such a wierd oscillating pattern? It's like I do fine sometimes and then get weak and the machine kicks in and then I do fine for a while and then the machine kicks in.
I will try to reply more tomorrow, but just wanted to say a back-up rate of 525ml is NOT low at all. It was higher than my prescribed number and I am WAY heavier than you. It goes off height anyways and you're shorter than me by a small amount. Whether you're 150, 200, 300, 400 lbs, etc., your Tidal Volume predicted is height based. You seem to have this misperception overweight/obese individuals need these giant air gulps because they are large. Overweight people usually have lower than expected Vt since their anatomy stops full lung expansion. Can you zoom in more on the OSCAR chart in areas where the pressures are being adjusted? Not much can be seen from the high-level overview. I assume the machine is raising pressure to meet the desired Vt programmed, but it would be helpful to know for sure. IVAPS is literally looking at your volume by the minute and changing pressure to accommodate. You definitely could be right about the waxing and waning issue.
If your doc is so suspecting of MG, have they prescribed possible meds to help? Any trials to see if things improve a bit if it's possible? I ask because this pops up on a search..
"There's no cure for myasthenia gravis. However, available treatments usually can control symptoms, allowing those diagnosed with the condition to lead relatively normal lives. In addition, most people with myasthenia gravis have a normal life expectancy."
What you didn't mention is the results of your new sleep titration study you were getting done? That seemed important.
They are still working me up for MG. So far I'm seronegative for that disease but they aren't ruling it out. I'm still worried about ALS because it presents like MG, despite my neuros reassurances that my negative EMG means I don't have it.
The thing I fear the most besides ALS is something called paraneoplastic LEMS. I don't seem to have antibodies for it but it can be seronegative too.
Very good points on the giant gulps of air. This is the heaviest I'be been although I've lost some weight recently on purpose. I hope to continue that trend. I know there's something limiting my breathing and I hope we find out soon so I can at least formulate a treatment plan.
Here's one thing that drives me batty - I was on BIPAP immediately and not cpap because I demonstrated to my first sleep doctor that I couldn't handle epap above 9 or it tired me out. The second sleep doctor doesn't seem to realize the clinical significance.
I'll zoom in on those spots tomorrow. Time to hit the hay!
