Man, oh man! I need help!

[JDC]

Been at it two and a half months. Still exhausted. Need help. Started with a Respironics and Swift FX. I was deemed 'severe' at 36 apneatic events an hour. Oxygen levels dipping to 70% a few times. After a week or so, my 'events' were fewer but leaks were bad. All my first month's leaks were over the '20/line'. Whatever that means?

Went and bought an S-9. Heated hose. Humidifier. I 'hang' the hose over my head to reduce hose screw-ups. Stayed with FX. Tried all pillows. Went back to 'medium' pillows. I am at a size that suggests something between medium and large pillows. I am 63. Male. My current numbers indicate an AHI of 4. Sometimes 2-3. Sometimes 5.

Gone from 'very loose' straps to so tight my nostrils were pushed up to my eyes. And every adjustment in between.

I even made a special pillow by carving a piece of foam so that the mask wasn't 'pushed around' by the foam.

My leak rate is usually over the line but sometimes as low as 12-15. And I am convinced that I am getting no REM. I wake 4 times a night. Always thirsty. But not a mouth breather.

And always tired.

Here's the main problem. I live remote. faraway-up-the-BC-coast remote. On an island. No roads, no power, no store. My sleep therapist is an idiot and simply 'doesn't get' that I cannot go in to see her at her convenience (she works five hours by boat and truck away from me - takes all day to go there and come back) just to be told the same gibberish that the machine is already telling me. Plus she is trying to 'charm' me and my wife all the time and I am in no mood for it. Costs me $200 in transportation costs just to go see her (and she is always late and smiling like a doofus!). So, I quit her.

If I didn't, I would have been arrested sometime in the future.

But that leaves me without 'input'. And, as much as I hate to admit it, she may have had some of that. I just couldn't suffer through the idiocy to get to it.

Can anyone tell me how to get rid of these damn leaks? Can anyone tell me what the numbers really mean? I think they mean I am still apnea-ing approx. 4 times an hour. But I have three 'types' of leaks and I don't understand them. Some are dark green on the chart (pretty low portion of dark green if any at all), about 40% are medium green - usually to 12-15. And the rest is light green - sometimes 'off the chart'.

Yes, I take a sedative to get to sleep.

[Pugsy]

I wake 4 times a night. Always thirsty. But not a mouth breather.

Why do you wake up? Just wake up or need to go to bathroom? Always thirsty as in dry mouth during the night or always thirsty during day also. Do leaks wake you up?

What pressure do you use?

The 3 colors of green on the summary graphs relate to severity of leak. Sounds like leak is huge part of problem.
Can't evaluate therapy very much until leaks are predominately under control. There is always to possibility of other factors affecting the quality of our sleep and the restorative powers. But have to start with making sure therapy is at least effective on paper. You may not be a mouth breather but I am thinking that when you fall asleep the mouth is dropping open and allowing some pressure to exit the mouth. This will affect therapy, dry mouth and even the numbers themselves if enough pressure is leaking.

Can you post a single night detailed data so we can see just how bad the leak is on a single night. Not the summary graph but the detailed data for single night?

Don't know how to post a copy of the report?
This will help.
How to insert image/report


Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 has the snipping tool.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.




To take a screenshot on the Mac, hold CMD+SHIFT+4

Click and hold on the upper-left corner of the area you want to capture
Drag to the lower-right corner and release

The screenshot will show up on your desktop.

[fuzzy96]

some people just cant get pillows to seal , i am one of those . we play mask roulette till we find ine that is comfortable and don't leak. then hope we don't gain or loose weight or something else changes.
do you have software? or are you just reading the lcd screen? since you mentioned chart i'm assuming software . please go to user control panel (upper left) and add your equipment to your profile. it will make it easier for us to help you.

[lars4life]

.

[BlackSpinner]

Big leaks and dry mouth = mouth breathing. You need to try a full face mask.

[JDC]

Instructions on snipping seemed good but I didn't get a postable image. I'll keep trying. Added equipment to profile.
I wake up to drink and pee mostly. But, for some reason, I also 'just wake up' at about 6:00. Go to bed about 11:30. And, NO. It is not because I am 'finished sleeping'. I am still tired.
I am pretty sure I am not mouth breathing. I have had that occur a couple of times and it is pretty obvious. Plus wife and doofus both stated that I didn't. I used Oximeter in the beginning. Still, I may try the full Lebowski but everyone seems to think this is good and the seal is fine going to bed and well, obviously I don't know what...........
I've put on a smidge of 'goo' to getter a better seal and it works. Just not enough.
I gotta figure out how to get that chart posted. In the meantime: my AHI and AI are (last night) 2.3/2.10
My pressure: 13.5, 12.5, 9.8
My leak rate 48.60, 26.80 and 0.0
I slept for 7 hours, 16 minutes, woke up 4 times. But to drink/pee water, I don't have to take the mask off. So, I don't. Less disturbing to wife..

[Robespierre]

JDC - have you been checked for diabetes lately? Waking up to pee and drink are signs of possible diabetes.

Another possibility is BPH. Until I got roto-rooted, I was getting up multiple times each night to pee and drink.

Good luck

[Pugsy]

My pressure: 13.5, 12.5, 9.8
My leak rate 48.60, 26.80 and 0.0

The first 2 are huge leaks and likely responsible for the higher pressures.

Zero leak that is great. How many of those do you have?
Can you tell if the large pillow gives a better leak number?

Either the pillows are becoming dislodged from the nostrils or your mouth is opening and you don't know it. Dry mouth is first sign of some air escaping.

Would you consider doing some sort of home made chin strap (ace bandage or something) to just see if it helps?
Taping is another thing to try. It isn't as bad as it sounds. You need to figure out for sure if that is happening.
Your wife doesn't stay awake all night and watch does she?
It is common for mouth to drop open especially when we roll on to our backs and for us to not know it.

[archangle]

Tape your mouth shut a few times and see if the leaks go away.

Get a paper copy of your prescription and buy a few different masks online and try them. Cheaper than a visit to your DME.

I'd say to try a full face mask, see what happens, then try a nasal mask if you don't like the full face mask.

[JDC]

You guys are good! I do have BPH. And I am 'borderline' type 2 Diabetes both of which are supposedly 'under control' (meaning: drugs).
But none of that was a problem before. Mind you, I haven't slept well in years so maybe it was. Anyway, they 'added' another diagnosis to the list and I proved to be apneatic. Ergo: the Cpap machine and even less sleep!

Even tho I am just as tired (if not more so) there is no question the 'events' are way down and I am assuming the oxygen is way up.

So, because of all that, I have gotten 'good'. No more Scotch. Small glass of wine at dinner. Lots of healthy food only throughout the day in little bits. Plenty of exercise.

But still poor sleep.

I am gonna try the tape-thing.

My 'leak rate' of 48/26/0 is all from one night. My Rescan chart indicates leaks with a graph coloured green. Dark green means bad leaks, medium dark means 'medium' leaks? And light green means -I am just guessing here - 'light leaks'. I have no 'bad' leaks but a helluva lot of light ones. Under-20 as a rule on the 'mediums'.

[Pugsy]

ResMed says that leaks over 24 L/min are beyond its ability to compensate. So when looking at a single night data and graph (not the summary with 3 greens) leak line itself if you spend much time near that red line or over, then you are potentially not having effective therapy at that time.

While we would like to slap on the mask and turn on the machine and have cpap cure all, it doesn't work that way. Sure wish it did.
If you have poor restorative sleep do to other factors, well, we just have to accept that fact and do what we can to improve on things.

I will be 59 next month. I have been on the machine will be 2 years end of next month. Took me about 3 weeks to get things dialed in so that leaks were minimal, AHI was minimal and gradually started getting more hours of sleep but I knew that my other health issues was also impacting how I felt each day. I had to be content knowing that at least I was preventing more damage due to lack of oxygen and stress on the heart from all the events.

I told someone once that I have never woke up and felt like running a marathon. To be honest even without the OSA diagnosis I wouldn't have felt like running a marathon but at least now when I wake up I don't feel like I just ran a marathon.

Work on the leaks so that you have the best therapy that you can have and then take a hard look at the other things to see if there is something that could be improved on and perhaps help the way you feel each day.

[xenablue]

IMHO, being 'borderline' diabetic is like being borderline pregnant. That said, do you test your glucose to see just how well those drugs are working for you? For me, all the diabetic drugs (other than insulin) are pretty useless if you aren't eating to your meter in the first place, but the meds will still only 'help' keep your glucose it won't work magic. I agree that high glucose might be the cause of your water in/out problem.

I've found my glucose numbers have slowly gone down since CPAP and the better night's sleep I have the better my numbers are in the morning. I haven't had to get up during the night to pee since my first night on CPAP, but before I was up at least twice per night.

Hang in there, JDC, it takes time to get everything lined up and working well, CPAP AND diabetes.

The good people here have lots of great advice, suggestions and support.

Cheers,
xena