4 years with Cpap, still struggling

[vancity]

Hi, first post, but struggling with Cpap for 4 long years.

After years of health problems ( since 2000 or before) I finally got a referral to an overnight sleep study. ( 2009).
They found I had Mild-moderate sleep apnea and PLM.
I started Cpap shortly after the study. First year I had a nose pillow mask. After awhile I learned that I opened my mouth while sleeping and had really bad dry mouth nightly. Finally switched to a fill face mask.
Troubles with Cpap continued. Can't handle the pressures. Have played with different ranges all with the same results.

My biggest problems over the past 4 years are:
-Tolerating the air pressures
~ Waking up abruptly at some point in the middle of night felling terrible.
~ Being waked up by my PLM
~ MAsk leaks
~Bloating/swallowing air

The overnight sleep study did not include a 2nd night to find an ideal pressure with mask. The dr just gave me a Rx ( 6-16) and sent me to a CPAP vendor ( all they want to do is sell me equipment).

My use of my machine is sporratic. If I have health problems, I can't use it. It might be catch 22 cause many of my health issues are probably from never sleeping properly ie: Depression, anxiety, tension ...just to name a few.

I take Atavan ( .5 mg|) but not everyday.When I take the Atavan it seems to get me through the night possible controlling the PLM?

I recently changed my machine to AutoPAP w/ C Flex. Not sure if its working as it seems to always be a the highest pressure, even after I wake up and look at the display. (currently set at 7-10, with a ramp up from 5.5 ~1/2 hr)

I am in the process of getting a referall to see the Sleep Dr again and to visit the place where I bought the machine to have it checked out. Not sure what the Dr. can do. Maybe need something to knock me out for the night.

It's been a rough 4 years on Cpap and recently. I have really hit rock bottom with my health, life and Cpap.

Any suggestion advice would be helpful as I am surely desperate.

Living in Vancouver, Canada.

ps hope this message is coherent enough as my concentration ( and typing) aren't that great.

[Hawthorne]

If you have an auto, it should have a data card in it. Sleepyhead is a free software that you can download and use to see what is happening during the night - what events (apneas, hypopneas, centrals, etc) you are havingas well as leaks, AHI, etc.

If you look at any of Pugsy's posts, you can see, at the bottom left, how to download Sleepyhead software. If you get that set up, you can better see what is happening at night. If you post some of that information here, people can be more help to you. If you can use a free program like Photobucket to post the night's data, then we can give even more help.

[vancity]

Thanks for your reply. I have an older Respironics RemStar Auto M Series with AFlex/C\Flex. It has a larger data card ( credit card size) and I don't have a reader for it. I am unemployed and don't have much money to buy any equipment.

I have been using the machine recently ( the last 3 weeks). The machine says an average AHI of 9.5 (7 days) as of this am.
Mask leak of 31.
I do have mask leaks and air escaping via my mouth, even though I have a full face mask.

I dread going to bed every night as I can never get even close to 5 hrs without the Atavan med.
Most disturbing is being shocked awake, feeling lousy and no chance of going back to sleep with machine/mask on. If I am lucky I may get back to sleep an hour later but mostly I am up till morning.

I'm a very light sleeper which does not help everything else.

[Pugsy]

What does the LCD say your pressure was for the last 7 nights? It reports a 90% pressure number which just means for 90% of the night you were at or below that number.

Your AHI is elevated higher than I would want. This likely means your minimum pressure is not able to get to where it needs to be quickly enough to get optimal effectiveness. You are having enough events that you aren't sleeping well...so no wonder you aren't feeling better. Hopefully if you can get the AHI reduce...your sleep quality will improve.
Can't guarantee it but have to start with what we know needs to be fixed first and your AHI needs to be reduced by about 50% at least.

See this thread of mine.
viewtopic.php?f=1&t=42302&p=372692#p372692
Old thread back when I first started therapy and some of the links are broken but I think enough is there to let you understand.

Leak rate is acceptable given your pressure and a full face mask. Large leak territory isn't until 90 L/min with that machine so you are in good shape there.

I know of one place where the card reader can be bought for $40 plus 6.50 S/H. That's the cheapest I know of.
I no long have mine or you could use it. I sold my M series APAP when I got my PR S1 machine a couple of years ago.
If you can get a card reader I can help you with software that is free and will work with your machine.

[Pugsy]

Oh, I forgot...SleepyHead won't work with your machine at all...but I can get you software that will work.

The aerophagia (bloating thing) issue ...we may need to do a bit of tweaking with the pressures depending on what that 90 % pressure is.

Having a wide range in pressures is probably not the best way to go about things because the varying pressures (especially the higher pressures) can make the bloating worse.

Having the software would help but we can work with what data we have on the machine right now.

Mask leaks...around the face...how old is the mask? Are those leaks disturbing your sleep? If so, that's a separate issue we need to address. They may be small enough to annoy you but not large enough to really impact the leak number overall....31 L/min average is really quite decent leak rate.
If you are out of work and can't afford the card reader then buying a new mask is going to be a problem too.
Do you absolutely have to have a full face mask? Can you normally breathe through your nose during the day?

[Hawthorne]

Getting data from that machine will be difficult. It does need a special card reader because the card is like a credit card. I'm not even sure the software is still available for it or if Sleepyhead will read it if you had the reader. Your AHI is too high. Well treated sleep apnea would show an AHI of 5 or preferably, below 5.

I think your best bet is to get to a new sleep doctor. I don't what kind of assistance in getting a machine might be available in BC. In Ontario we have the Assitive Devices Program but health care in Canada, as you know, is a Provincial matter so I don't know what BC would offer if anything.

Equipment online from the USA is much cheaper. Maybe a site like SecondWind might have something newer that you can afford. Check it out. If you have your prescription, you can buy a machine online.

I see Pugwsy has replied as well. Maybe something in her post will help you.

[Pugsy]

I don't know if your machine choice will show up as a good link in your equipment profile or not. Some of the older discontinued models are having broken link problems.
Just add your machine to your comments line.
Just say "M series APAP" machine....that's good enough. That way we know for sure what machine you are using.
Humidifier is the M series heated humidifier...not the one you are showing now. That humidifier was pre M series humidifier.

[vancity]

My average pressure for 7 days is at 10 ( range is 7-10 )
My mask is old...2 years or so, but seems to be in good shape...but prob need new one for sure.
Even with full face mask air goes through my mouth and I get dried out.

My sleep study was at UBC, not sure if there are other sleep Drs in Vancouver but will check.

Seems like reading the big data card from my machine will be tough

Tried to put that Resperonics machine in equipment field but didn't show up, will put in comments later and update.

[Pugsy]

You are maxing out that 10 cm pressure max range all night...you need an increase in the maximum to reduce the AHI.
How bad is the bloating at 10 cm now?
So what you probably need to try is 9 minimum and maybe 13 maximum. Do you think your stomach can handle it?
Dry mouth even with a full face mask and humidifier set to 5...that means you are mouth breathing a lot.
The humidifier can't put back enough moisture to keep things moist. Turn up the humidifier if you can.
Biotene makes some products to help with dry mouth...found in the mouthwash section of most stores.
It may help enough to be more comfortable. Make sure to keep yourself well hydrated with water.

[vancity]

Not sure if I can handle higher pressure but I can try. It makes sense that if my average is 10 every night i need a higher setting. I remember a pressure set to 12 or so and it would almost blow my mask off. If its too high I start to choke from the pressure and prone to swallow air etc. I know how to adjust my machine so maybe I will go to 8 and 11...or 12...

I'm not really mouth breathing but my mouth drops open during sleep and obviously the air rushes out and dries me out. Maybe I will buy a head band. I used one before and had an awful night . Keeps my mouth closed, but at a higher pressure it made me swallow air and bloated me up.

I'll give all this a try and see what the Resp tech says when I go. Hope to see her next week.

[Pugsy]

Try using 8 min and 11 maximum for a week if you can tolerate it. We have to wait a week to see the weekly averages to see any effect on the AHI and 90% pressure numbers. You won't see any significant change until you have more nights at the new settings.
That's the disadvantage to not having the software where we could evaluate a single night by itself.

[vancity]

Thx Pugsy, I will try 8-11 and see what happens.
I think having a card reader and software would be helpful on a daily basis.
Hope I have a better night than last night

Thx again for the help.

[Pugsy]

When you have $46.50 to burn let me know and I will point you to where the card reader can be found.
The software....that's easy and free when you get to a point where you can use it.

If the aerophagia gets markedly worse before the AHI goes down...you probably need a bilevel machine anyway...but that's another discussion. I wouldn't be spending any more money on this machine right now until I found out if the aerophagia is going to be a deal breaker.

[nanwilson]

Hi
If your mask is 2 years old you are sure to need a new silicone insert for it. I have a few slightly used ones, size medium, that I can send you if that is the size that you need. Let us know if it is and I will mail you what you need for the mask. I am in southern Alberta so can send it to you in the mail as soon as you let me know what you need.
Cheers
Nan

[vancity]

Ok, I'll see what happens at higher pressure levels.
I really feel like I'm in no win situation. Need higher pressure, but can't tolerate them .

I tried A Flex setting, but couldn't even fall asleep with it on, made the mask "thump" up and down on my face with the pressure changes in the inhale and exhale cycles....made it easier to breath though...maybe thats what a BiPap does?
...another conversation...