New CPAP therapy not working right

[SleeplessUK]

OK, a couple of updates. I've got sleepyhead working, and downloaded the information. The problem is there is too much to fit onto one screen. Which bits should I include in a screenshot?

Also my Resmed S9 doesn't seem to record sleep right. It shows I slept for about 1 minute out of 5 hours, yet I recall having my best night with the mask. I was able to even get back to sleep with it after a small interruption. Is this a sleepyhead issue or is my sleep that disturbed?

For what it's worth the AHI counts haven't gone over 16 which is loads better than 50.

I have an appt on Wednesday to see a nurse about the mask. Is there anything to look out for?

[palerider]

https://sleep.tnet.com/resources/sleepyhead/shorganize

read all three pages, links on the bottom of the first two pages.

follow them *exactly* and you'll have success.

[jweeks]

Hi,

A few items of note...

1) Some folks believe that apnea is a cause of weight gain, and not the other way around. It can be very hard to lose weight when the sleep issue is not under control.

2) Your metabolism seems like it is very, very low. If you are not losing weight on 1400 calories of food, then you need to get your body to burn more calories. Muscle burns far more calories than fat. Join a work-out center and do at least one class every day. Use weights to build some tone, do core workouts, pool aerobics, and step classes. As an example, when I was 330 lbs, I burned only about 1200 calories a day. Now, at 170 lbs, I burn around 2800 calories a day. I can eat twice as much and still maintain my weight, and lose weight when I am in a training peak.

3) Don't be embarrassed about the machine. If you had a broken arm, would you be embarrassed about having a cast? Or if you had weak eyesight, would you be embarrassed about eye glasses or contacts? The answer is "no". Well, your sleep is broken, and the machine is your cast or glasses. Use it proudly and be happy that there is such an easy treatment for such a terrible disease. And be happy you don't have to take shots on a daily basis or take some drug with nasty side effects. Trust me, it would be far more embarrassing to have a stroke and end up in a nursing home because of not using the machine.

-john-

[SleeplessUK]

Hope this works...


http://i.imgur.com/f90BFIn.png

I'm not sure what it all means, but to me something just isn't right. Leaky mask, dry mouth, or just not sure if I'm giving it enough time.

[Julie]

Just throwing this in - if your sleep position leads to your head bending down, your airway can be cut off quite a bit and many people use soft cervical collars to keep their heads up, airways more open (helping flow rate) and jaws more closed... something to consider?

[rick blaine]

Again, SleeplessUK, you need some background information.

1. There's two makes of machine which - for the last seven or eight years - have had the bulk of the market - Philips Respironics and ResMed.

Until recently, the two most popular Philips models were the fixed-pressure PR System One 460 and the auto-adjusting PR System One 560.

Until recently, the two most-popular ResMed models were the fixed-pressure ResMed S9 Elite and the auto-adjusting ResMed S9 Autoset.

All four of these machines date from the era where having a humidifer was an afterthought in design terms. An add-on.

Meaning you could buy an add-on unit which clipped on to the the pressure-giving machine. This was because patients said that the air coming from the pressure machine on its own was cold, and dry. And they said it gave them a dry mouth.

In the last two years, both Philips Respironiics and ResMed have brought out new machines - with the humidifier already built in.

In the PR range, the new Dreamstation comes in (essentially) four versions - the fixed-pressure CPAP Pro, the pressure-adjusting Auto CPAP, the two-fixed-pressures BiPAP Pro, and the two-variable-pressures Auto-BiPAP. (We'll come back to that in a minute.)

In the ResMed range, the new Airsense machines - with the already-built-in humidifier - are the fixed-pressure Airsense 10 Elite and the auto-adjusting Airsense 10 Autoset.

2. Now, what does all this mean for you?

Well, what you've been given is an older, fixed-pressure machine - without humidifier.

The policy here in Gloucestershire used to be the same - the fixed-pressure PR S1 461. But I noticed on my annual follow-up last week that the hospital is now issuing some patients with a humidifier.

The reason that sleep service departments in NHS foundation hospitals - like the one you go to, and like the one I go to - give out fixed-pressure machines is budgets.

The retail price of the PR S1 461 is £399. My local hospital - Gloucestershire Royal - gets them from Philips Respironics at a bulk-buy price of under £200 per unit. Your hospital in the north-east of England probably gets the same kind of bulk-buy deal from ResMed UK.

The second thing I'm trying to tell you (as I did in a previous post) is that you might be better off with an auto machine (I'm tempted to say "you would be better off ... " but UK law prevents me ). But - and it's an important but - you would have to buy it yourself.

Last time I checked, Philips Respironics UK still had in stock the System One 561 APAP - at £499. And if you were to buy the add-on humidifier at the same time, the combined price would be £599.

I do not have the equivalent price and availability information for ResMed.

3. I said I'd say more about BiPAP. A few years back, the doctors who treat sleep apnea noticed that when patients needed quite high pressures - say, 15 cm and above - quite a few of them complained that it was hard work breathing out against that.

And there was also the then-strange phenomenon that, with these higher pressures - whether the patients said it was hard work or not - some patients had more central apneas than they started out with. Centrals are when the airway is wide open, but there's no air moving, no breathing. (They're the purple marks in your Sleepyhead events diagram.)

The suggestion was that it was high-pressure CPAP itself which was causing them (altho before I get over-corrected, there are other causes for centrals),

The solution, arrived at by the docs and the machine manufacturers in combination, was to tweak the design of their existing blowers - to have them rapidly slow down and then just as rapidly speed up - and thus provide TWO pressures. One for the out-breath (expiration), and the other for the in-breath (inspiration). Such machines are generically called 'bi-level' - and one manufacturer, Philips Respironics, has trademarked the name 'BiPAP.

The reason I'm mentioning this is: my hunch is that you are one of those people who needs bi-level, or BiPAP. (And remember, this is only a hunch. I am not a doctor.)

Bi-level machines cost more. The one Philips Respironics makes in their System One 'model-number-ending-in-60' range costs £850.

I don't know if the doctors in your sleep-service unit will cover that - if indeed that did become the prescription. If it did become the recommendation, then the doctors at your sleep service unit would have to apply to have extra money spent on your treatment. They would have to make what's called an 'individual funding request' - and they would have to make the case for so doing.

And making that argument would probably include: first demonstrating that they - and you - had tried the existing standard treatment.

If an individual funding request were made, and were to be turned down - or if at any time you just wanted to take matters into your own hands - then, again, you can buy a BiPAP out of your own money.

4. As I said, it is only my hunch. However well informed I may appear , I am not medically-qualified.

And in any event, I wouldn't want to give you detailed suggestions based on just one night's results. And with the issue of mask-fit still not adequately resolved. Until the mask-fit bit is nailed down, we're all just speculating. Do let us know how your appointment today went.

[SleeplessUK]

Thank you again to everyone for your help. I appreciate the suggestions and guidance from you all.

Just returned from the Hospital. First thing I learned when I was at my appointment was this.....You can't talk with 10.2 pressure being blasted at you.

It's a shame that the sleep clinic has to share space with other wards. First time I had to go to the Respiratory ward, this time to the Surgery ward. I hope it gets a place of it's own soon.

I was a lot more impressed with the nurse that I saw today when compared to the one who fit my mask the first time. He looked over the machine and saw the recent events and noticed I am still having occurrences ( I take it those mean apneas) and saw that I may need to higher pressure, but would keep it the same till the doctor had a chance to see the treatment so far. Apparently they would like to see how I fit into the treatment plan so far and then make changes if needed.

One thing he also noticed was my Medium mask was too big for me as it went too far over my nose. When put on the right area (the bridge) of my nose the bottom of the mask went to the end of my chin. I actually thought the mask may have been too small, but to be honest other than a gas mask I have no experience so I went with it. The nurse also asked me more questions about what type of sleeper I am, and how I tend to go to sleep. He was pushing for me to be a nose breather, but while I don't really know, my wife says my mouth is normally wide open. With that in mind he gave me a small Quattro Air mask with has a forehead support. He also did a mask fit using my machine to see if it was ok. There was a small amount of leaking sitting up, but when I laid down it was gone. The machine seemed to think it was ok as well. It showed a green smiley face! Real test will be when I go to sleep. He also mentioned CPAP therapy was all about the mask. The mask is apparently the hardest part to get right, but once you do it gets easier from there. I guess that sounds like good advice considering that is the part of therapy which takes the most getting used to.

Lastly I mentioned my dry mouth since using the machine, and they gave me the added humidifier to try out as well. It's going to be an interesting night!

Thank you all again.

[Sir NoddinOff]

All good ideas and information. Thanks a lot. I managed to get the data off of the CPAP machine into sleepyhead. My next goal is how to get it uploaded for everyone, and even try to comprehend it all.

Here you go:

You've already got Sleepyhead but for others.
Here’s the link on where to get free Sleepyhead software:
http://www.sleepfiles.com/SH2/?TestingVersions
If you like Sleepyhead and use it, please try to donate to Mark for his great work… the ‘donate’ link/button down the page a bit.
-------------------------------
Here, in order, are the three excellent links that graphically show you how to get the correctly sized Sleepyhead images to show up in your CPAPtalk post:
https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/resources/sleepy ... screenshot
https://sleep.tnet.com/reference/tips/imgur
Don’t worry if you blow it the first time… most of us did!

Here are some of Pugsy’s tips using Sleepyhead… six pages worth!
viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html

[Julie]

Dry mouth = mouth breathing and therapy air leaking.

[rick blaine]

I'm glad things went well.

1, The idea of a treatment plan is a good one. Identify one thing at a time, and adjust as necessary. Then review that, before moving on to the next thing.

2. Mask fit IS one of the two keys. Which is why it's worth spending time on.

As to design - an earlier generation of 'full-face' masks went to the edge or even 'below' the chin. And that didn't always work. But the innovation of the ResMed Quattro was to: (a) have double hovercraft-like 'skirts', and (b) have the bottom of the mask sit in the 'valley' between the lip and the crest of the chin.

As they say, it's not a bug, it's a feature.

3. If you have any further issues with mask leaks, then a 'lining' or cloth seal can make the difference. In the US, you would contact Pad-A-Cheek (at http://www.padacheek.com). But since you are in the UK, you might try a firm called Eu-PAP (aka Intus Healthcare), in Reading, Berkshire, on: 0844 504 9999. They offer a mail-order service, including mask liners.

4. I note that the sleep service department have given you a humidifier. My guess is, now that manufacturers have moved on to their newer machines, and are promoting those quite vigorously, they are more than happy - as good business practice - to liquidate the stock in their warehouse ... and have offered the add-on humidifiers to the NHS at a mutually-beneficial bulk rate.

What I'm saying is: you're lucky. My sleep service wasn't handing out humidifiers five years ago. I had to buy my own.

5. And if I might offer a 'political' observation - overall, your treatment on the NHS so far hasn't been too shabby, has it?

[SleeplessUK]

Good Morning! or is it?

New night, new mask, and new humidifier. I guess it's too early to suggest it's not right yet as it may take a few nights to get used to the new set up, that and the humidity level may still be tool low at 3. Looks like it can go up to 6 so I may go 3.5 or 4 tonight. I am also going to try to figure out how to reduce the ramp up time to maybe 10 or so minutes, then hopefully none.

I woke up about 3 times last night, not because I couldn't breath, or the mask wasn't right, but I swear the machine turned off on me. I was too tired to do an in depth investigation in the middle of the night, so I still need to check the numbers through sleepyhead to confirm it. I hope it's just me getting used to the machine and a more suitable mask. The current pressure of 10.2 doesn't seem as invasive as it used to feel. I learned how to look on the machine for a very vague idea of how the night went, and before I fiddled with it at about 6am this morning, the AHI showed around 8, screen was green with a nice smiley face, then shot up to 11 when I was finally done but still smiling.

About 30 minutes prior to my alarm going off I woke up and when I went back to sleep I noticed a lot of leaking around the pipe on the Quattro Air mask. I think it's just my imagination as the design seems to have the vents all the way around the inlet for the pipe. I wouldn't have designed it that way, but the mask checker on the machine seems to think it's fine. I guess I just didn't notice this at the mask fitting or I would have mentioned it.

Thank you for all of the info Rick, I'll look into Intus. If this is something I'm going to need for a while, I might as well make it as comfortable as possible.

Oh and as for the NHS, I can only compare it to the Health care in Oregon and the US Army.

US Healthcare - Apart from when I was young, as an adult out of the Army I only used the US Healthcare a few times, paid my deductible to see a doctor and paid a fairly expensive prescription charge compared to the deductible. I had insurance through one of my jobs which covered health, dental, and vision. It's how I was raised though, so I was used to the system. I guess it depends on how much you need to use it as the deductibles can nickel and dime you to death.

US Army - Everything I need was given to me with very little fuss, unless it's deemed as an unessential extra, but even then they are extra cautious about things and give you plenty of time to recover. Air Evac is fast and effective, and they often provide Air support to ensure I get to the hospital safely. An added bonus in my eyes! All of the doctors who saw me did a great job patching me up, and I never had to wait for anything. Not to mention prescriptions were always free. Can't fault it, and should have never left it. I can't praise the Army enough.

NHS - I always hear about the horrors of the NHS waiting times, strikes, shortages, costs, helping everyone not just those who contribute into the system,etc.., but for me I've only ever seen good things. Maybe had to wait up to 1 month to be seen for most things, and those were fairly minor issues which were resolved normally on the same visit. With Sleep Apnea, I went to my doctor who referred me (first time!) to the Hospital which maybe took 1 week at the most, given an Oximeter for a home study overnight a week later, and saw a Doctor a week after that. Then I was fitted with a machine (free) 2 weeks later along with a Mask (free as well). It could have been sooner for picking up a machine, but I have to give my work 1 weeks notice to take the time off. So from the time I saw my GP, to the time I started using my CPAP was only about 5 weeks in total, but again could have been 4 weeks. Like I mentioned I went back and was given another mask (free), though they took my old one so I can't keep comparing, and added the humidifier (Free again).

I only have two issues really with the system. For most things it takes a couple of visits to the GP (first line of defence for the NHS) to get referred onwards. I usually wait for a month or so anyways before even visiting a Doctor to see if things get better, or to decide if it's really worth it. When I do go and see them, the usual response is give it another 2 weeks and see if it improves. It's not until the 2nd or 3rd time going to them that they refer me on. I had glandular Fever which was killing me for over a month before I was sorted, but once past the GP's treatment was painless. It may be a regional thing, who knows. The other is the fact some doctors seem to raise prescriptions for items that can sometimes be purchased cheaper without one. If a cream, or pill only costs £3 over the counter why would I want to pay over £8 for it? I've been lucky on a few occasions going to the drug store where they notice this and steer me in the right direction.

I'll see if I can upload another screenshot of yesterdays results to show the differences. Hopefully they will be a lot better. If anyone sees any obvious issues with it please let me know. Right now it's just a bunch of wiggly lines on a page where strangely enough a flat line is a good thing!

I just wanted to add something as a side note. At least my youngest daughter who is 7 has noticed the mask and equipment. She immediately knew what it was for and it was thanks to a TV program on Nick called iCarly. Apparently there is a character on there who needs it for sleeping as well. If I knew how to contact the Creator Dan Schneider I would have thanked him personally for adding that to his program.

[SleeplessUK]

All good ideas and information. Thanks a lot. I managed to get the data off of the CPAP machine into sleepyhead. My next goal is how to get it uploaded for everyone, and even try to comprehend it all.

Here you go:

You've already got Sleepyhead but for others.
Here’s the link on where to get free Sleepyhead software:
http://www.sleepfiles.com/SH2/?TestingVersions
If you like Sleepyhead and use it, please try to donate to Mark for his great work… the ‘donate’ link/button down the page a bit.
-------------------------------
Here, in order, are the three excellent links that graphically show you how to get the correctly sized Sleepyhead images to show up in your CPAPtalk post:
https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/resources/sleepy ... screenshot
https://sleep.tnet.com/reference/tips/imgur
Don’t worry if you blow it the first time… most of us did!

Here are some of Pugsy’s tips using Sleepyhead… six pages worth!
viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html

Thanks for the information. I'm still amazed by the abundance of information for this. Before I was diagnosed I didn't even know there was such a thing as Sleep Apnea!

[rick blaine]

SleeplessUK wrote:

"I am also going to try to figure out how to reduce the ramp up time."

To change the ramp time and other features, it may help to read the User Guide.

I'm assuming they didn't give you a copy of the User Guide, since you weren't a purchaser. This is a link to the on-line version - the relevant bits are 'Control panel' and 'Navigating the menus':

http://www.resmed.com/uk/dam/documents/ ... r1_eng.pdf

Oh, and while I'm at it, a correction. You said in your first post that you'd been given "a ResMed Elite" and I thought you meant the Airsense 10 Elite, and not the S9 Elite. My bad.

The 10 Elite has cellular phone-in capability. The S9 Elite does not. Just the SD card.

[SleeplessUK]

Ok, new mask, new Humidifier, and I got this for yesterdays sleep. Pleas ignore from about 5:20 onwards as I was awake and fiddling with the machine. Best night sleep so far though.


http://i.imgur.com/dWhUYZX.png

imgur doesn't seem to have a thumbnail option anymore and they still come out big. Next time I'll make the image smaller before I post it.

So based on this, I take it my leak is ok? My snore seems low as well I guess. Is this considered successful treatment?

[palerider]

Next time I'll make the image smaller before I post it.

DO NOT DO THAT.

it makes the image useless, you can't make it bigger without making it fuzzy and unreadable.

log in to get the thumbnail option, or just put a lower case l before the .png in the imgur url.