No luck with cpap but want to try again

Norma45 wrote: ↑

Tue Jun 02, 2020 11:45 pm

Pugsy, sorry I missed reading the second page and when I saw there was one and read those posts, I took away my suggestion (since there were other issues being focused on - e.g. the CAs). I did that shortly before you posted. But I am appreciated your posting about lower pressures - while I had seen others post that info, you were the first one that explained things in a way that made sense.

No problem. You were just wanting to help and this particular little quirky thing this guy has going on not everyone understands especially when new to all this therapy..

That's why I took the time to explain in detail...so you could learn about something that is different from your experience....as well as any other people who might be looking at this thread. It took me quite some time to wrap my head around it myself and I have years using cpap experience plus a sizable knowledge base from past work in the medical profession and my own education in that area.
Part of the reason it was even hard for me to understand initially was the fact that normally regular bilevel used to be the first go to machine when someone had centrals happen after starting cpap. And often it will work as long as the bilevel pressures themselves aren't the trigger and they aren't always the trigger.

I always tell people that the only consistent hard fact rule with anything regarding sleep apnea therapy is the fact that there are no hard fast rules. There are tons of exceptions with everything.

Morning there,

Decided that I wouldn't try for second sleep without the mask so I'm up super early. Numbers are definitely improving for the o2, clear airway, and the csr. Just wish I slept longer. We'll see if I feel better today as yesterday I felt pretty cruddy all day. I'm extremely tired right now but don't have that dizzy feeling.

I'm not having the 3-4am awakening with anxiety though. So that's a good new change. I'm actually a bit optimistic for once. I was watching a video last night on someone with sleep apnea and they said in the beginning they would only get 5-6 hours of sleep as well and that it slowly moved to 7-8 hours and feeling great. So fingers crossed there.

My mask is giving me nose pain which isn't fun. I remember last time it took a bit for my nose to toughen up to this thing. I wore some medical tape on my nose which helped but hurt to take off. I ordered some mole skin so perhaps that can help. I also have that bleep mask coming on Friday and I'm eager to try that. I went through my mask graveyard and re-tried some old masks and they weren't any more comfortable/non-leak this time unfortunately.

Thanks again Pugsy and everyone

Solomon

Thank you for the follow up. Your butt will probably start dragging today simply from not enough hours of sleep.

If it is any relief to you to know you aren't alone in the short hours of sleep despite what we obviously need when I first started cpap therapy I was lucky to get 4 hours of sleep. Part of it I chalked up to just wearing the mask and all that newness and my brain wanting to alert me to the alien on my face but I suspect there was also some habit built in there because prior to cpap therapy I woke often just from the apnea events and the body just thought it was time to wake up again.

It took me probably 3 months to gradually work up from 4 to 5 hours to around 6 or 7 and even longer to get closer to 8 hours.
I happen to be someone who really needs close to 8 hours of fairly solid sleep to feel my best. I have learned this over the years from personal experience. Now I am older and have other issues that mess with my sleep I find I have a continual battle to get the number of hours of sleep my body needs.

All this for me and I certainly didn't have the additional challenge that you seem to have with the treatment emergent central apnea issues you have been unlucky enough to experience.

As for mask issues and sore nose....are you using the nasal pillow mask you show in your profile? If so...go get some Lansinoh lanolin ointment/cream (baby aisle of most stores because it's a product breast feeding moms use) and apply it liberally during the day and sparingly at night. It will help a lot with the soreness. Also be careful to not over tighten the mask. Nasal pillow masks don't have to be tight to maintain a seal. Anything more than minor tenderness usually means either the wrong size nasal pillow or simply the straps are too tight.

Pugsy wrote: ↑

Wed Jun 03, 2020 8:31 am

It took me probably 3 months to gradually work up from 4 to 5 hours to around 6 or 7 and even longer to get closer to 8 hours.

It's always nice to hear the stories of others as this is something I've dealt with alone for sooo long. So many doctors look at me like I'm crazy it's really frustrating. That this can take a long time to work makes me want to keep trying.

Pugsy wrote: ↑

Wed Jun 03, 2020 8:31 am

Now I am older and have other issues that mess with my sleep I find I have a continual battle to get the number of hours of sleep my body needs.

Sorry that there are other issues. People never really understand how lacking good sleep robs you of your life.

So yesterday was interesting because I was tired all day but didn't have the usual "on drugs" feeling I have all day. I was tired but kind of in a good mood. So that is making me optimistic.

I got my new bleep mask and wore it last night. Very cool! Took me a bit to get to sleep as I just wasn't used to it and couldn't figure out where to put the tube. Usually I have the tube above me but that pulled my nose. Finally had it below me and was able to fall asleep on my side. I had to keep adjusting the connection because it was hissing out air from where the tube thing connects to my nose - i just kept pressing and eventually it got a good seal. It could be reworked to have a nicer snap i think. I wore my head strap last night to keep my mouth closed but tonight I might try my mouth tape.

Anyways ! I slept likely 7 hours! No o2 drops below 92%. Bunch of clear airway and hypopnea events though. Throat feels a bit scratchy and I got a bit of a headache/dizzy like normal. We'll see how today goes !

Solomon

Using a hose management system might help with the Bleep hose position problem.
You will eventually figure out the snapping in thing but here's what I do.
I apply the adhesive ports. Then I attach the hose part which involves the snapping in port thing...then I put the palm of my hand over the end of the hose and try to breathe. If things aren't snapped it quite right it's pretty obvious because you will be able to easily breathe. When secure and all attached tight..you won't be able to breathe with your hand blocking the hose. It's how I leak check.

I am not alarmed about the number of centrals last night. Wish they weren't there but they are and they are going to be there and sometimes cluster for a few weeks at a minimum. Some are real and some are SWJ false positives. I am hopeful that both will decrease in number with time and better sleep during the night.

If you haven't seen this yet, take a look at https://www.youtube.com/watch?v=L-pRVlAo6Ic, which is the CEO of Bleep showing how to do that test Pugsy describes, and a bunch of other useful information (like tube management).

Actually, it was after watching that video that I order mine. I wish it would get here!

Pugsy wrote: ↑

Thu Jun 04, 2020 8:29 am

If things aren't snapped it quite right it's pretty obvious because you will be able to easily breathe. When secure and all attached tight..you won't be able to breathe with your hand blocking the hose. It's how I leak check.

Thank you, I wasn’t quite sure because of the small holes in the (relief?) hose. Watching the video and your explanation makes sense. I’ll try this tonight.

khauser wrote: ↑

Thu Jun 04, 2020 1:31 pm

https://www.youtube.com/watch?v=L-pRVlAo6Ic

This is very helpful. Thank you

khauser wrote: ↑

Thu Jun 04, 2020 1:31 pm

Actually, it was after watching that video that I order mine. I wish it would get here!

Hah ! When RogerSC mentioned the bleep a few days ago I thought it would be amazing if it worked so I ended up ordering it from two different companies to see if one could get it to me quicker. Excited to try it last night. It made a big difference in just the first night. No waking up with pain, no wanting to take it off in the morning, and no worrying about leaks when I move to my side. Just need to iron out a few things

1. I’m super acne prone so hoping my skin doesn’t freak out. I ordered some pads to clean my skin after since the glue sticks around. I’m honestly hoping getting my sleep fixed will help my skin in the long run

2. Hose management: ordered that hose thing he recommended. Wearing the hose down is ok but I prefer it above me

3. Getting it on night: that video and pugsy’s advice will hopefully help me tonight. I was squeezing it on the wrong part to clip it in

intemperance wrote: ↑

Thu Jun 04, 2020 2:07 pm

Hah ! When RogerSC mentioned the bleep a few days ago I thought it would be amazing if it worked so I ended up ordering it from two different companies to see if one could get it to me quicker. Excited to try it last night. It made a big difference in just the first night. No waking up with pain, no wanting to take it off in the morning, and no worrying about leaks when I move to my side. Just need to iron out a few things

1. I’m super acne prone so hoping my skin doesn’t freak out. I ordered some pads to clean my skin after since the glue sticks around. I’m honestly hoping getting my sleep fixed will help my skin in the long run

2. Hose management: ordered that hose thing he recommended. Wearing the hose down is ok but I prefer it above me

3. Getting it on night: that video and pugsy’s advice will hopefully help me tonight. I was squeezing it on the wrong part to clip it in

I have eczema, and it is especially bad on my nose. But hey, maybe some of that extra peeling skin will be removed for me by this.

Also, about hose management, I read that there was a bit of consternation around the host that comes with the bleep. I don't recall how long ago this was, and there was some suggestion that bleep was looking to change the hose. I guess the one that was (or is) included was on the stiff side....

The Bleep vent holes really don't move much air until you are under pressure from the machine so if you do my little palm of the hand trick and things are sealed good it is really obvious you can't move air.
If you can freely breathe or hear air moving...those little ports aren't clicked in solidly.

About the hose....yes it is a bit short for a lot of people and it is a bit stiff but it's not horrible stiff. I rather like it being shorter myself but I can understand why others don't.
There are plans for a new, longer and more flexible hose in the Bleep future but that development has taken a hit between usual money issues and covid issues. Be patient...Stuart has heard the negative comments and continues to try to improve the Bleep.

In the meantime...if someone hates the hose...the P10 hose will fit and I think the N20 hose can be adapted to also fit so you get longer and more flexible. Super easy to alter...I did a bit of surgery on an old P10 short hose and stuck it on the Bleep just to see if it was difficult or not. It's easy.

Morning there friends,

Yesterday I was pretty tired all day unfortunately.

Last night I decided to use the mouth tape and it didn't turn out great. Woke up at 3am with a dry mouth and throat ( the mouth tape has a slit in it so you don't die ). I removed the tape and went to the head strap and got some water. Then at 6:30 in my sleep i pulled the hose out of the mask and that woke me up. I was able to snooze a bit on and off until 8:30.

Looks like i had a lot of o2 drops and some time below 90%. Also a lot of mask leaks which is a bit weird. I did the mask test before going to sleep and it was fine.

According to the statistics the minimum O2 level was 89%. Not alarmingly low and the median average is 96% which is well within acceptable limits. I would expect some drops in O2 levels with the dense clustering of centrals. So that's not unexpected and while we would rather not have them it wouldn't even qualify for adding O2. I think the line in the sand is 88% for some amount of time (which I forget). You didn't spend much time below 90%.

You also had a bad night due to mask issues and other stuff. Not sure where the leaks are coming from unless the adhesive was a bit loose or something. There are a few big spikes which totally baffle me...very intermittent. I can't explain those at all.
I am not familiar with the use of mouth tape that has slits in it...I know its out there. I don't know just how much air can be moved or will be moved by someone who is mouth breathing. Maybe it's a lot more that a person would think and you were doing it.
When I taped my mouth I used cheap old blue painters tape and had no fears of dying...so I have never tried that tape with the slits.

Pugsy, it looks like my cpap card has all my old data from 2 years ago. Looking through it it pretty much looks like the data today. Some nights with AHI below 5, a lot with it in the 7-12 range. Lots of Central Apneas that are clustered together and no obstructions. Sleep length between 5 and 7 hours. Looks like my machine was set from 4-7. Looking through these I was dealing with a lot of leak issues back then.

I'll post one here just in case it's useful

Pretty much what I expected as the older results. Some nights more centrals than others which is likely what you are going to see happen now.
They also may be more in clusters that are random. I once asked a sleep tech why people who get centrals with just adding cpap and why some parts of the night a lot of centrals and sometimes none. We would expect to see the all night if cpap were the cause and his response to me is that no one really knows what seems to trigger that carbon dioxide wash out thing which leads to centrals in terms of why so different during different parts of the night. We know what causes the centrals but it's not well know why it can vary so much sometimes even during a single night.

How long did you give cpap a try the first time?

Pugsy wrote: ↑

Fri Jun 05, 2020 12:34 pm

How long did you give cpap a try the first time?

Looks like about 5-6 months of using it daily. I do know i had a lot of trouble with it. Waking up in the middle of the night. Taking it off in the morning and sleeping more. I also seem to remember I get “better” when I stopped using it. Better as in not as horrible as the cpap but still the normal terrible tired.

Well....I have some thoughts about whether if I were in your shoes with a diagnostic AHI of about 8 and no centrals...and what cpap did to me....I am not so sure that I wouldn't have done what you did...stop treatment.
Just random thoughts and I am sure a lot would depend on multiple factors including just how low my O2 went without cpap and just how bad did I feel as in worse with cpap than without.

You elected to try cpap again and I assume it was because you were feeling pretty crappy. That's why I am trying to help make it work but if you get to a point where using cpap makes you feel worse then obviously we have to rethink the options available.

Remember I said that sometimes treatment emergent central apnea will fade with time as the body adjusts. I have no way to know if you used it enough to give the body a fair shot at adjusting on its own. We never know for sure if giving it time will work much less how long it might take. It's not a short term thing though. Everything I have read points to months and months of giving it time IF (big if) it works and there's no guarantee that it will fade away.
And months and months of feeling worse isn't much of a solution is it? I understand that fact. I wouldn't be happy with it myself.

We could fix both problems right now today with one different machine....the ASV bilevel machine. It will auto adjust and treat the obstructive side of your problem and breathe for you when you have the central side of your problem that using the cpap seems to cause.
They aren't cheap. They aren't easy to find. To get insurance to pay there are a lot of hurdles....and since you don't have one I am instead trying to make what you have work for you. I have been trying to save you a lot of hurdle jumping as well as money because sometimes the centrals will end on their own or reduce enough that they aren't a problem. I tend to try to work with what is available whenever I can unless I see a marked definite need for something different because of the severity of the problem.

Example....this is the report below from someone who couldn't give it time...no amount of time would ever have fixed his central problem. I would have told him to immediately see his doctor and start hurdle jumping.

All I can do now is say continue with status quo and work with the mask issues because the mask issues themselves will give us crappy sleep and make us feel awful and at this point we can't really tell how much the centrals are causing the crappy feeling or the mask and general sleep quality itself is causing the crappy feeling. I wish I could offer better but my crystal ball doesn't work so good to help me out.