Backwards

Rebamom wrote: ↑

Thu Apr 12, 2018 7:20 pm

I'll slip it on later. Cleaning will be easier that way and a nice way to use up some of my scraps - a "coat" of many colors!

Good idea. Send pics

I have reached the stage of analyzing the situation and sort through various facts to reach a better understanding. What I truly do not understand and can not seem to find an answer to is this: Sleep Apnea is a sleep disorder and Cpap is an effective treatment for this disorder, not a cure by a long shot. The question is if you are faithfully using the treatment, why would the body not accept the treatment over time, send a signal to the brain that this is the proper behavior for the body and over time heal itself or at least condition the body to breathe deeply, evenly and continuously?

It makes sense to me that we can retrain our minds/bodies in other areas to behave/react differently - I see no difference here. The thought crossed my mind that maybe because I am asleep, the mind does not function. But I/we know this not to be true, as the mind is actually very active during sleep.

As for the loss of energy and feeling more tired, I believe I have found the answer for me. Here again is a matter of retraining the brain. For some reason when I started this therapy, it was like someone threw a "brake" on and said it's time to slow down. I have an internal battle going on and can't seem to find the "gas pedal" to get going. Why? My focus for the last month has been on this diagnosis and therapy and not focusing on what is important to me - my business, my family - the people I take care of. Time to reset the focus and turn on the gas and get back to reality. No more slow down time - a month is long enough. Of course I will still discuss with my doctor but unless he can find something to indicate otherwise, he is going to tell me it's in my head any way.

This would be an excellent field of study...

With simple apnea the airway collapses. CPAP machines keep the airway open by using a very small amount of pressure. During the day our conscious mind keeps our airway open by contracting the muscles around the airway. When we sleep the subconscious mind lets these muscles relax and if they relax the airway has the possibility of collapsing.

CPAP does treat the condition but it does nothing to exercise the subconscious mind into making a relaxing exception for the muscles around the airway.

Some people think that breathing exercises such as playing the didgeridoo can help, but unless you are playing in your sleep the subconscious mind takes over and everything relaxes.

What we need is to re-program the subconscious to maintain the airway in sleep just like it keeps the heart beating. I don't think they know how to do this... yet.

Because for most, it is not a mental issue. The muscles that relax are under autonomic control and there is not a learned pathway to keeping muscle tension while relaxing. That's for the too much relaxing muscle part of OSA. For other causes of OSA, it is sometimes a part is too big for the provided area. That also is not a learnable thing, unless you can will your tongue, uvula or another anatomy to get smaller. In my case, I cannot fully control my tongue (in a biblical sense) while fully awake and alert, controlling that unruly bastard when asleep is not possible and it relaxes back down my throat. Then we have those annoying fatty tissue deposits that cause obstructions. Once again, I cannot even while fully alert control those sags and bounces, much less while asleep.

As far as central, one school of thought is that it is a lack of messaging between the brain and the diaphragm, that may or may not be "learnable", I don't know at all. Or it there is an issue with the CO2 sensors, that's likely not learnable.

In short, we are stuck with some kind of external treatment for SA, but after being sleep deprived for over 40 years, it feels so fantastic to get a restful nights sleep, I will happily accept all the external help I need. I love my CPAP so much, mostly, I want to kiss it goodnight. But like all lovers, we do at time have our little spats, and I want to through that damn mask across the room. But make-up breathing is so sweet.

Thank you Hosecrusher. Wasn't sure if anyone could answer that. I understand that part of the concept now - okay a little .

So now I'll start at the beginning, start researching why the airway collapses and see what interesting things develop there and what research has been done to help prevent that on a permanent basis. From what I'm starting to see, this is not a rare problem, so there has to be research going on somewhere, whether it be fixing the cause or retraining the mind.

Thank you TASmart! Excellent information and love the testimony there. Unfortunately I do not share that same "love" with mine and really don't foresee that anytime in the near future. It's more like the man I got rid of and he keeps getting back in my bed.

Rebamom wrote: ↑

Sat Apr 14, 2018 5:56 am

I have reached the stage of analyzing the situation and sort through various facts to reach a better understanding. What I truly do not understand and can not seem to find an answer to is this: Sleep Apnea is a sleep disorder and Cpap is an effective treatment for this disorder, not a cure by a long shot. The question is if you are faithfully using the treatment, why would the body not accept the treatment over time, send a signal to the brain that this is the proper behavior for the body and over time heal itself or at least condition the body to breathe deeply, evenly and continuously?

In many ways, it helps to think of cpap like one thinks of eyeglasses.

First, there's the people that say "I'm 100% compliant but I still feel like shit" ... but their machine isn't set up properly for their actual needs... the same as if you've got eyeglasses that aren't right for your eyes... you can wear them all day, and your vision is still going to be fuzzy.

Second, like glasses, there's no 'training' of your brain to see better... put on glasses, see clearly, take them off, see fuzzily. put on cpap, breath well, take off cpap, breath poorly.

Hi Rebamom,
Some people take to the CPAP very easily, some have to work at it a while, and then they become compliant. And then there are those that cannot get used to it and they go searching for other ways to control their sleep apnea. A lot try their best to ignor it or pretend it is not serious.
Which group do you fall into?

"So now I'll start at the beginning, start researching why the airway collapses and see what interesting things develop there and what research has been done to help prevent that on a permanent basis. From what I'm starting to see, this is not a rare problem, so there has to be research going on somewhere, whether it be fixing the cause or retraining the mind."

It sounds to me that you plan to take a similar path to me. I have not taken to the CPAP well. Everything told me to lose weight, which I did, and was able to reduce my untreated sleep apnea from an AHI of 19.5 to 13.5 as confirmed by an HST. That was last year.
I did some more serious research and came up with a plan to 'cure' myself of sleep apnea. I recently completed a couple of HSTs and will continue with my activities. My untreated AHI is now around 5.

I started a thread on Apneaboard in Jan outlining my plan. Maybe it could help you with some of your reasearch.

http://www.apneaboard.com/forums/Thread ... leep-Apnea

Hi Mogy,

I use the Cpap, have been compliant since Day 1 - getting used to it is another thing - I have low tolerance to anything touching me when I sleep (I still wonder how much that played a part when I did the sleep study - I slept so little because I couldn't handle the stuff on my body - I don't know if it is a real number). I have to take a really strong "just do it" attitude. The research is Yes, I would love to find not something better - but how to prevent and/or cure my body - I have always been into natural healing, but so far do not believe this is one of those things that will work. But more importantly understanding why this happens, what happens, etc keeps me strong and at least breathing until I do find what I'm looking for. Yes, I plan to lose weight - quite a bit of it actually, that might fix two conditions at once.

I will take some time to look at the material at your link - the more information anyone can get when used as research is good. Then it is up to me to put it all together to make some sense of it.

I finally had my sleep doctor appointment yesterday - I was really quite shocked - the first time a doctor actually listened to me and allowed me to ask questions. He focused very little on the SA, and is more interested in improving my quality of life by healing the rest of my body - I am simply blown away.

Concern #1 - all of a sudden my blood pressure has shot way up - I've never had anything over 130/89 and now it is 156/98. Something I have to watch but I have been under extra stress lately. (Hence - I get a stress test now, lol).

Concern #2 - the weight - of which he genuinely is interested in helping me get rid of it. I nearly begged my regular MD for help and nothing, so this is refreshing.

I slept better last night since the day I started my Cpap - still awake several times, and much more activity than I have had the entire last 30 days, but still nothing to be concerned as far as numbers go. I am noticing a frequency of Centrals for the last 3 nights, but I had starting sleeping a little deeper - maybe that is why.

He gave me permission to change the machine to Auto and I am not sure what I should for the numbers, how high should I go? I currently have a ramp of 5.5 and the pressure is 11. Any suggestions?

Some people will immediately say to set the upper pressure limit to 20 and let the machine see where it wants to go. Personally, I would try a setting of 10 first, and see where the machine wants to go. If the machine starts bumping up against the upper limit of 10, raise the upper limit gradually by 1 or 2 cm at a time. You may need to raise the lower limit, but the only way to know is to look at your data after a few nights. Don't make changes based on one night's data, but on trends.

Thank you Okie - Since I am already at 11, maybe go up two or three to 13 or 14 and go from there. I'm also going to call the company, who actually has to unlock this thing to change to auto and see what they recommend.

If you have been using a fixed pressure of 11 and the AHI is acceptable...I think if I was going to go with auto mode I would try a little less minimum press than the 11 and maybe a little more maximum just to see where it goes.

Like minimum of 9 and max of 14...small range...small variations in pressure and less likely to annoy a person and wake them up.
Re evaluate the pressure settings once we see a report...if a lot of OAs and hyponeas..more minimum and if the machine hits the max of 14 very much then more max. If it doesn't even go there (to the 14) doesn't really matter what it is set at.

Continue to use ramp if you feel better with it at whatever you like.

Thanks Pugsy - Will try that - have to play with the minimum because even the 5 is uncomfortable at the start. I thought I might try 6 first and maybe cut the ramp time from 30 to 20 - normally takes that long to fall asleep and adjust as I see what happens. He told me to play with it until I started feeling my energy return, so playtime it is.

I noted as well that looking at my sleep report and then the titration report, a major part of my problem is the stages of sleep - over 50% of my night is either awake or in a light sleep. The other 50% is divided between deep and REM equally. Possible RLS is written as I had over 100 leg movements during the titration. All I know is they hurt. I think with this therapy I am starting to even out the sleep stages, although I am concerned I might miss a phone call, which I actually did over the weekend. Getting better and moving forward for sure.

In your playing with things...play with EPR too if you aren't already. It might just help you with the initial issues you have with the pressure while awake.

What is EPR?