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For those that don't know, this is a good example of a false OA flag that I see a lot. Very often it's associated with changing body position in bed. Looking at the flow rate graph you can see normal asleep breathing leading up to a deep breath, then breathing stops for 10 seconds or more and the machine records an OA event. What this means is that I woke up took a deep breath and held it for more than 10 seconds while I turned my body in bed. Took some even deeper breaths because I exerted myself and then went right back to sleep after that.

This screen shot also shows me that my orientation graph is not in sync with the flag chart. The shift in body position should line up with holding my breath. The times are skewed. I'll have to look into fixing that.
Edit: I think I know what I going on with the time skew. It's off by like 30 seconds. When setting the time on my Resmed machine it doesn't show time in seconds. Also it doesn't start the clock until you exit. It's quite hard to get the times synced exactly. I remember messing around with the time setting in the past and it was very hard to get the time set down to the second on the Resmed machine. I've since figured out that you can adjust for clock drift in Oscar so that everything lines up properly.

Also you can see looking at the pressure graph that the machine ramped up the pressure to compensate for the supposed OA event. Obviously in this case it was not necessary for the machine to do anything but it didn't know that I was turning in bed. Maybe in the future we'll have movement sensors in our masks or something that will let the machine know that we are turning in bed so it doesn't ramp up the pressure when it's unnecessary.

Maybe this will help someone in the future. This is the approach I'm taking to find the right doctor since this stuff is pretty rare and there doesn't seem to be much experience or guidance on the matter. After some studying I found out that doing things while you are asleep are called parasomnia. Rem sleep disorder is just one type of parasomnia. I searched all the neurologists in my area from my insurance website. I then read through the certifications and experience of around 100 doctors. Specifically looking for certification and experience in neurology, sleep medicine and parasomnia. That narrowed it down to about 8 doctors which I still need to decide on. Obviously I'll put together a good package of medical history, cpap data, other data I collected and have a good description of how I got to this point of knowledge. Hopefully that will take things in the right direction and save me a lot of stress of dealing with our not so efficient medical system. And hopefully save a ton of money on non relevant medical care. Been down that road many times.

Have been slowly decreasing my machine pressure. I'm down to 2/3 of what it was and ahi is around 1-2 each night. All the events that I am seeing appear to be false. I'm unconsciously doing things in bed all night and the machine keeps recording false events. It still appears to me that a lot of the events, even from seven years ago when I started on the machine are false. Probably why the machine never seemed to make much difference.

So many people in the medical field said my ahi numbers look good and the machine is doing what it is supposed to do so all is well, when I kept saying it wasn't. If they would have actually looked at the details of the data they would have seen it differently. In my case the flow rate graph tells a whole different story than the ahi numbers. It's quite possible that many of those people don't know how to interpret flow rate graphs and breathing patterns or maybe never looked at them. Maybe there was just one person that looked at that data from the sleep study and got it wrong.

I'm pretty excited because it's possible in the future I may be able to give up the machine. I'll keep at it and keep studying.

Rob K wrote: ↑

Wed Dec 30, 2020 9:38 pm

Have been slowly decreasing my machine pressure. I'm down to 2/3 of what it was

... and that is ____ ?

For some time I've I had it set to bilevel mode to get pressure relief at higher pressures. To get my ahi below one I had the pressure set to Max IPAP 15, Min EPAP 9, and PS3. Pressure was averaging around 12-12.50 most nights so didn't really ramp up much because of my settings. I purposely didn't want to be annoyed by to much ramping up of the pressure. In the past it seemed like getting ahi lower helped but doesn't seem to make much difference anymore. I just feel bad all the time. Also at the time I made a lot of life changes and now I'm thinking that is what made the most difference and not the machine settings.

Now I have been working my way down with the pressure. Last night I switched to cpap mode since I don't need pressure relief at a lower setting. At 8cm last night with 1.9 ahi. I looked through the entire timeline and flow rate graph from last night and everything appears to be false except for a few questionable events. Nearly all the flagged events coincide with me doing stuff in bed. So still seeing the same pattern as I decrease pressure.

Reviewed the two sleep studies again. I learn new things every time.

First sleep study:
Final tiration was at 8cm. Looks like 6cm takes care of most events.
Awake oxygen ranged from 92-99 with 96.8 mean.
Alseep oxygen ranged from 88-99 with 95.8 mean.
Periodic limb movements 0
While titrated for half the night arousals were 12.9/hr, 9 from breathing and 83 spontaneous for 92 total

Second sleep study:
Final titration was at 5cm
Awake oxygen ranged from 93-99
Asleep oxygen ranged from 90-98 with 94 mean.
Periodic limb movements 17.2/hr
While titrated for half the night arousals 13.9/hr, no details noted but from what I could count looks like 2 RERA and spontaneous arousals around 75 total


It is likely that I will get pretty low with the pressure before I start seeing true breathing events. I maybe still have mild apnea but hopefully none now the tumor was removed.

The biggest thing that stands out are the insane number of spontaneous arousals. The sleep study numbers only make note of arousals while titrated but in my second study I have a copy of all the flagged events for the night and it shows just as many spontaneous arousals before titration as during. That pretty much says it all right there. Many spontaneous arousals through the night are not from breathing problems. So it has been a huge problem all along.

Did your ENT mention your Mallampati score, https://www.medscape.com/answers/295807 ... -apnea-osa , since recovery from the surgery?

My ENT/surgeon didn't mention that. This is the first I've heard of it. After removing the large larnyx tumor in 2017 the machine was still recording a number of events so I assumed I still had mild apnea. Now I'm on a mission to get the pressure down and see what happens. Going to 7cm tonight. I don't want to go right to 4cm. I feel bad enough and don't want to risk a very poor night if I still have breathing problems. I haven't been down to 5cm since 2016 so this is going to be an interesting test.

The night after my larynx surgery I had an ahi of zero. That's the only time that has happened. 7 flow limitations were flagged and nothing else. The next night I started seeing more events. Zero ahi for one night probably had something to do with the meds I was on.

Down to 6cm and ahi is still real low. Looking at the flow rate graph, this chart clearly shows light sleep and rem stages where I have a lot of activity and a lot of false events can be recorded. Somnopose shows I had a least 40 arrousals last night. The video will show more that Somnopose doesn't pick up. So I can safely say around 40-50 arrousals last night. I feel bad even though ahi is low.

I also watched another full night of video. I see a lot of toe and finger flexing, foot jerking and sometimes a head or leg jerk during what I think is deep sleep stages. My sleep study shows periodic limb movements during those stages. Also the video shows a ton of activity during what are likely light and rem stages. My eyes move a lot, toe and finger flexes, head/body/arm/leg/foot jerks, moving legs slowly, sometimes kicking of legs. Also I turn in bed, adjust body or limb position unconsciously a good deal of the time. I always wondered how I ended up in a different position when I woke.

It's really hard to believe this slipped past so many medical people during the many appointments I had over the years to figure this out. Sure feels amazing to finally get some answers even though I had to figure a lot out on my own, of course with some help from you all.

Here's an update. Had pressure set to 4cm for a few days, the lowest it will go. AHI stayed around 1 and most events appeared to be false. That's much better than in the past when my AHI would creep up a fair amount at low pressure. Last night I went without the machine for the first time in years. Woke around 10 times that I remember. My data says it was much more than that, like 50-60 times last night. My sleep pad said I had more than normal breathing problems for the first time ever. A lot more snoring was recorded. While awake and while on xpap my oxygen ranges from about 93-99% and averages about 96-97% at night while sleeping. Last night without the xpap oxygen ranged from 90-99 average of 96%. There was a few brief dips below my normal from sleeping on my back.

This says I do have some minor breathing problems still on my back. AHI remained low unlike the past so I believe the removal of the tumor helped but did not completely resolve the problem.

It remains to be seen if I can go completely without the machine. I will continue to use it and pretty frequently do some nights without it to see what my oxygen looks like. Will experiment with this stuff until I get to talk to the doc and hopefully get the main problem worked out which is many spontaneous arousals without consciousness. At least that's what the interpretation was on my sleep studies. I guess they could have interpreted wrong. No idea how they determine breathing vs spontaneous arousals.

Hi. I think I may have posted in your prior thread, but since you've brought your many movements up again, I'd just like to interject that untreated limb movements can be very detrimental to sleep. Has your ferritin level been checked? Common thinking is that people with limb movement issues should keep their ferritin up around 100 even though much lower is acceptable for people without limb movement issues. What about your magnesium and Vitamin D? Anything related to nerve and/or muscle health is a logical place to start. I don't know how far you want to take your experimentation, but my experimenting with using a TENS Unit turned out to be my long term non pharma solution. For the first few years I used 4 electrodes on my lower back (actually buttocks) as prescribed for lower back pain. At some point I was able to go to 2 electrodes, and now I rarely need anything, but I keep my TENS handy for occasional jumpy nights. If you choose to try this, I recommend consistent use for a few months before deciding if it is doing any good. My relief wasn't in one magical night, but rather on and off for a very long time. I persevered because it was my last hope, and because the occasional good nights gave me hope for more. It seems from following your story that trying the next thing is how you are wired. Some of that probably comes from a desperation for relief. You'll need to make a conscious decision to not follow that impulse if you expect to find out if you and TENS are going to work out. Don't change anything up just to see what happens. Good luck with whatever you decide to do. If you do try TENS, I'd love to hear how it goes over time.

Hi. I think I may have posted in your prior thread, but since you've brought your many movements up again, I'd just like to interject that untreated limb movements can be very detrimental to sleep. Has your ferritin level been checked? Common thinking is that people with limb movement issues should keep their ferritin up around 100 even though much lower is acceptable for people without limb movement issues. What about your magnesium and Vitamin D? Anything related to nerve and/or muscle health is a logical place to start. I don't know how far you want to take your experimentation, but my experimenting with using a TENS Unit turned out to be my long term non pharma solution. For the first few years I used 4 electrodes on my lower back (actually buttocks) as prescribed for lower back pain. At some point I was able to go to 2 electrodes, and now I rarely need anything, but I keep my TENS handy for occasional jumpy nights. If you choose to try this, I recommend consistent use for a few months before deciding if it is doing any good. My relief wasn't in one magical night, but rather on and off for a very long time. I persevered because it was my last hope, and because the occasional good nights gave me hope for more. It seems from following your story that trying the next thing is how you are wired. Some of that probably comes from a desperation for relief. You'll need to make a conscious decision to not follow that impulse if you expect to find out if you and TENS are going to work out. Don't change anything up just to see what happens. Good luck with whatever you decide to do. If you do try TENS, I'd love to hear how it goes over time.

btw, I have a theory about spontaneous arousals in people with limb movements. Please note this is not scientific, purely anecdotal. When I was experiencing augmentation on a dopamine agonist, one of the effects was it caused my movements to not only be exaggerated, but also to intrude into semi-awake time that was recorded in sleep studies as wake time, so the movements weren't even counted. Being aware of what was going on helped me to understand my movements better. There is a distinct uncomfortable sensation in the seconds preceding a jerk. Like the tightening of a twisted rubber band before it springs loose. If that sensation causes an arousal and resulting change of position that prevents the impending movement, that arousal cannot be identified as related to a movement, although it really was. I would be curious if your spontaneous arousals decreased if your limb movements were resolved.

Kteague. I started another thread because the other went in a completely different direction from where it started and reached a dead end. I wanted to get some fresh eyes on the subject. Thanks so much for taking the time to post. Feels good to get your insight since you have some experience with this stuff.

My vitamin D levels were deficient in the past. I have been on the low end of normal for several years with taking a supplement every day. It's usually in the 30's ng/ml. I looked at my lab results and found that I have not had ferritin checked for a while. Six years ago it was 69ng/ml and five years ago it was 79ng/ml. Both are on the lower end of normal. Magnesium was tested 6 years ago and was 2.0mg/dl which is in the middle of the range. Why wouldn't they test blood for everything on a regular basis? Especially if your having problems. I guess I have to specifically request that they test more things.

Never heard of TENS, I'll look into it.

kteague wrote: ↑

Mon Jan 25, 2021 3:25 am

I would be curious if your spontaneous arousals decreased if your limb movements were resolved.

I think there is a good chance of it. I get plm's(minor hand and foot movements) during deep sleep stages. Also very frequent large movements during light and rem stages where I'm not conscious, but from watching the video it looks like I have completely woken up to adjust limb and body position.