Sleeping worse with machine

Okay guys and gals

I'm tired and cranky....still.

I hope my experiences with CPAP is different for everybody else.

Went to the doctor told him "I snore" He said" go to sleep lab" I did.
They said" have apnea need CPAP set at 7" I said " cool , bring it on"

I got the machine on trila three weeks ago,( it's a white one )

When I pick it up I was told how to clean the machine ( I guess to keep it white ) and to breathe through my nose. I asked about the button on the front and was told it was for a feature for something called "RAMP " but not to use it because " I was ramp" ???? When I inquired ( $5.00 word for asked ) about the humidifier I was told not to use it because " that was for the winter" The RMT test fit the mask, had me sign a receipt for the trail period ( 1 month ) and sent me on my way.

The first night I had a real hard time falling asleep and when I did my wife woke me up to tell me I was snoring....AGAIN.....I though this machine ( the white one ...remember ) was susposed to eliminated the snoring, after all that was my complaint .

Anyways it's now three weeks later and I'm still ired and not getting the sleep I should be.

I have to admit that I have disobey the RMT and Doctor....I have kicked my machine up to 10" filled and use the humidifier and use the ramp...HOLY CRAP I sleep through the night...don't snore but I'm still very tired...

Sorry i don't have any spiffy numbers like everybody else does nor do I understand them...if you really need number I can make some up for you if you really want some.

I have to return this machine ( the white one ) on Wednesday and decide if I buy one or go back to sleeping on the couch. Being in Canada our provincial government pays 75% of the cost if I purchase through a Canadian retailer so CPAP.COM isn't really an option.


Any thoughts or suggestions???

Sounds to me like your PRESSURE SETTING IS TO LOW OR TO HIGH. You might also need to buy a machine like a Remstar Auto ( meaning it automatically adjusts to you breathing level) I was having the same problems as you a few months ago when I was on trial with the cpap machines so after the trial period was over I told them I wanted to buy the remstar auto cflex and he said my Insurance would not pay for it so I paid for it out of my own pocket and i've been sleeping like a baby with it. I've had it for 2 weeks now and I feel better as each day goes by, maybe you should think about that but sounds like you definately need the " AUTO" ! I'm glad to hear that you turned on the humidifier and the ramp is to start the air pressure slowly, mine is set on 4 and my pressure is set on 10. You really need to order the snugglehose cover for you 6 ft. hose to as it helps with the rainout thing and it's warm at night you can get them at cpap.com. The cpap auto lower's the air pressure with each exhailed breath. I was so tired and sleepy when I was on that month trial and just used the regular Remstar without AUTO and I was swallowing air, snoring, and my lungs and back hurt so they let me try the Remstar Auto CFlex and I feel lika a BRAND NEW PERSON! Ask them if you can try an AUTO or at least call them and tell them how you feel... OH, I wouldn't buy a white machine, they get to dirty and show to much dust. Also, you need to wash your tubing and hoses, and your humidifier tank every day in Lukewarm Water & Ivory Dish Soap and let them air dry all day, do it in the early morning I can't believe they didn't tell you that, also be sure to only use " DISTILLED WATER" in the humidifier tank and remove it before you fill it Goodluck and keep us all posted. Take Care

sleeplessinCanada wrote:Being in Canada our provincial government pays 75% of the cost if I purchase through a Canadian retailer so CPAP.COM isn't really an option.

You need to find out the total dollars they're gonna ding you for. 25% of a highly inflated Canadian retailer price MIGHT be more expensive than through CPAP.COM.

It DOES take some time to get to feeling better. Some are lucky and experience immediate results.....some take longer. Three to six months isn't unusual.

What mask did you get? If you got a nasal mask, make sure you're not leaking air out your mouth.....that can negate your therapy.

Don't feel bad.....lots of us disobeyed our doctors. I was prescribed 18 cm and ended up with 10 cm for about a year......then bumped it up to 12 (where I'm at now).

Den

Without the numbers, (Made up or not), we are left to give you suggestions,(Made up or not), My suggestion would be to use a FF Mask then you would have the mouthleak problems covered. That would be one less area for failure, or if you use a nasal mask you could tape your mouth shut.

Treatment doesn't work unless the pressure can hold your airway open. You need to join in and fill in your profile with the equiptment you use, I'm just guessing about the nasal mask becaise that's one of the ways for treatment failure (pretty common). Jim

Thoughts and suggestion:

It's good to hear that you're sleeping all night and not snoring - very smart of you to have stated using the humidifier.

We'ld love to help you, but most us have discovered that we need some extra training if we want the treatment to work.

Training in things like:
Looking at our machine to see what its name is, and what the model number is, since that tells us something about what this specific (white) machine will do as opposed to another (white, or black or beige) machine will do.

Things like looking for info about the machine's impact on how we breathe - which means we had to learn a few unfamiliar terms like apnea, hypopnea, AHI - and even learning to count them.

Things like accepting the fact that some of the professionals who instruct us with our equipment have no idea what it takes to really sleep with it - and don't know much more about the machines than we do when we start (oh yeah, the white machine, that's what we gave you, right?)

Are you in the mood to train yourself for those things?

For all we know:
You may still be tired because your body simply needs more time to get over some major sleep deprivation.

You may still be tired because your pressure is too low.
You may still be tired because your pressure is too high.
You may still be tired because you're one of the people who wake up slightly whenever the machine changes pressure - but we don't know if you have a self adjusting pressure changing machine (also know as APAP)

We really don't know at this point.

At the bottom of this post you'll find the strange terms marked in blue - a click on the link will bring to a definition of what it means.

O.

Sorry about " the white one" its a Fisher Paykel HC2221 with a ultra mirage mask.

I thought I had activated the thingys on the bottom of my post but I guess not.

I do not know if I can download anything from this machine. It has a ramp button with green idiot light, a humidifier dial on the front and the on off switch on the side ans an adjustment screw with display on the side. It's a loaner and has to go back on Wednesday. The RMT never said anything about software, personally I think that would have confused her more than anything.

I believe the base price here in Ontario is about $1000 for a machine with the government paying $750. To get the upgraded mask, full training, a cleaning kit and DVD there is an additional charge of $830. Benifits at work cover $500 leaving me with out of pocket expenses of $0 - $330. so kinda on par with what I see on CPAP.com....providing of course the machines are compatible.

My bitch is with the doctor and the supplier...." Here.... wear this and breathe through your mouth". I came home and fully expected to get a good nights sleep and wake the next morning feeling fully refreashed and alert. I wish I had found this forum BEFORE I got the loaner.

With doctor shortages and long wait times for treatment and absurd pricing for the equipment you really have to take charge and be informed to ask the RIGHT questions. To me the doctor was more interested in perscribing a machine and the RMT was more interested in moving people out of her office then anything else

Looks like you got an old style machine, it's no longer in their catlogue or on their site/

http://www.fphcare.com/osa/cpapi.asp

http://www.fphcare.com/osa/pdf/OSA_HC_P ... lowres.pdf

I certainly wouldn't buy it - if that suggestion is made. I wonder if they can give you a trial run on something more up to date.

If you search for posts by WillSucceed, with the word "Border" you'll get some tips about how to handle the "buy in the US use in Canada" issue.

And getting a data collecting machine - and data reporting - machine is definitely worth the cost.

O.

Hi SleeplessinCanada,

Where in the earth do you live in Ontario to have received such dismal service?! I realize that I've learned more here on cpaptalk.com than I learned from my DME but I definitely learned more than just "here's your machine and breathe through your nose".

I've never had to buy anything through the US but ozij is correct that WillSucceed has odered cpap things from the US and managed. You could PM him and perhaps he can help you.

Good luck. Hope things get better.
France in Ottawa

sleepless
well, i'm in ontario and i DID get such dismal service from my supplier...sorry frapilu, i think that's the norm; almost everything i've learned about cpap, i've learned on these boards

do whatever you have to do to get a data capable machine...you might have a really hard time getting an Auto (through the Assistive Devices Program, which is the provincial coverage crap) if you don't 'qualify'...here is a link to a discussion explaining eligibility requirements for apap:

viewtopic.php?t=23084&highlight=

but if you're willing to pay out of pocket, and you have the prescription in your hand (or you can get it) you an order an APAP with a CPAP rx through cpap.com...the whole setup is around $600, which, in my case, would still be less than the amount my supplier wants to gouge me for just to 'upgrade' my current setup, on top of the $1100 they already gouged for (still waiting to hear back from those shysters, they really care about their clients);

if you can't get an Auto, at least push for a fully data capable CPAP, do yourself a favour and don't settle for less...i've been on for 8 months now and i'm still not seeing the results i should be in spite of being 100% compliant and doing everything i possibly can to make this work...if i had data collection i could at least find out what's happening in the night and take steps to correct any issues, instead of having to wait months at a time to see my sleep doc so he can tell me to 'give it a few more months'

there are many kind folks on these boards who can make suggestions around what type of machine to push for, (lots of opinions, 'your mileage may vary') and if you read, read, read before having to make a choice, you'll be miles ahead of those moronic suppliers who are only out to make a buck (case in point: my machine is a fisher paykel 234...the supplier got their $780 from ADP, plus another $400 that they billed my private insurance for, and the machine only costs $380 on cpap.com to begin with...sickening) it's essentially my own fault that i was saddled with this bare bones crap, since i didn't know any better, but i hadn't found this forum yet...i'm always so happy for folks who come here first, since they can educate themselves way beyond what the supplier is willing to teach them and they have a much better chance of succeeding with this therapy

good idea to search 'willsucceed'...he is in toronto, and has lots of experience dealing with this stuff...he has given me some great advice in the past; there are a few others that i know of who are also in ontario and i imagine they'll weigh in as well; frapilu has data capability, i think, and so does jabberwock, in oakville, so they might be able to point you in the right direction based on their experiences

best of luck, sleepless, hope you can get exactly what you need

sharon1965

Not gonna buy this machine...after listening to y'all I think I wanna/need a data capable system. Enough guessing. I'm a technician by trade and hate looking for problems without the proper tools.

I live in southern Ontario about an hour from the Big Smoke ( Toronto ).




Thanks alot for all the assiatance.....any other comment are atill appreciated.

No, unfortunately, I don't have data capabilities on my 4-year-old cpap. Next summer I'll be allowed to have a new xpap and my DME told me that she's make a package of an APAP with a reader & software so that it all goes through as one price. Until then, I have nothing.

France

oh france, that is poopy

how have you managed for 4 years without the data? obviously pretty well, i guess...but do you qualify for an APAP (assuming you'll be going through ADP)?

how's your nose?

sharon

Hi Sharon,

I don't know what you mean by qualifying for an APAP? The DME didn't say anything about that. What do you need to do to wualify for an APAP. I would definitely be going through ADP.

Nose is doing ok. It's been almost 2 weeks and the end of my nose is a little sensitive as well as my nose being sooooo very dry but it's ok. I honestly don't see a big difference from before though, so I'm a little disappointed. I have periods of a clear nose and periods of congestion, exactly like I had before. But the doctor's post-op instructions did say that it could take up to a month so I'm trying to be patient. Did you experience this too?

Thanks
France

http://tinyurl.com/36outa

frap, here is the link to the discussion about apap eligibility(mainly the post by "bones"...something about having to document on your psg that your needs change throughout the night, as in supine vs non-supine, and rem vs non-rem sleep; at my checkup in july my sleep doc told me that my apneas are consistent regardless of position or sleep stage, so he wouldn't prescribe me an auto, said i didn't qualify (again, these are ADP guidelines)

it took the end of my nose a few months to be back to normal, and the ENT told me that when i could lay my palm flat against it and kind of smoosh it around without pain, then everything was healed...

when you say congestion, you mean actual stuffiness, as in mucus? because as you may or may not know, your nose cycles all the time with one nostril or the other blocked some of the time and the other nostril doing all the work; then sometimes they are both open...that is normal, as long as it isn't always one side that is blocked...i hope this is what you are experiencing...how long has it been again? not long i think...but i didn't breathe through my nose at all until those stents were out, so my experience was different than yours, since i wasn't even trying to breathe for at least 2 weeks

Hmmm, that's interesting because when my DME and I discussed it last year, she didn't say anything about having to qualify for an APAP. I guess I'll have to give her a call to ask. Mind you, I can't get a new machine of any sort at all until next year.

Thanks for the food for thought. I really thought all those discussions about qualifying and things like that were just for the Americans.

For my nose, I guess it's almost healed because I can smoosh it around and only feel a bit of tenderness on the right side. The outside edges of the nostrils are still irritated and dry so I'm having to constantly use polysporin on them or else they burn.

My surgery wasn't quite 2 weeks ago but I didn't have any stents so that really does make a huge difference. My nose is not stuffed with mucus but rather just blocked and it's generally my left side, which was the one that was mostly blocked before surgery. So far I can say that it's blocked less often than it used to be, so that's progress but it's still blocked a fair amount of the time.

Last night my full face mask was driving me crazy with leaking so I managed to sleep with my old nasal HC406. I had tried it the other day and only managed to do part of the night but had to change back to my UMFF when the blocking became just too much. Last night I managed longer with the HC406. But it's only been less than 2 weeks and the doctor's sheet did say to expect a month. So I'm trying to be patient. But I don't do patience well

France