DME Reads Card, Calls me.

skits · Post by **skits** » Thu Oct 18, 2007 8:22 pm

I made an appt. with sleep doc. Asked if I should bring my card in. Said to have DME read it. Brought it there on my noon hour. Got a voice message that gee, I seem to average 1 hour a night (true) and was there anything they could do to help. I called him back, said yeah, but did you see the four hours? He said yeah.. You did sleep once for four hours. But those four hours were in the middle of the day in front of the TV. I don't want to do drugs every night just for two hours sleep.

I'm not sure what sleep doc will say, but I'm TRYING every night. It just gets to a point after an hour of lying there that it comes off. Often seems like more than an hour. I'm on my work week now, so I can't just lie there for three hours and not sleep. HELP!!

I'll do some tylenol PM tonight, but I doubt that will work. I've never slept well anyway, but had finally gotten a way to get to sleep, which no longer works when I'm in the vader mode.

Sorry to whine again tonight......

Nightwatcher · Post by **Nightwatcher** » Thu Oct 18, 2007 11:01 pm

I feel the same damn way you do. I am sleeping so much worse now. I make it 2-4 hours, then I get up and whiz. It's really hard to put it back on. I want a few good hours of sleep!!

I've made 5 hours once and 6 hours another time. That's after 2 months.

keep trying, keep trying ... ah ___ it! (just kidding!)

Guest · Post by **Guest** » Thu Oct 18, 2007 11:52 pm

I've been on cpap for about 3 months, I think, lol! For the first few months, I would get anywhere from 4-6 hours a night and fought the mask & air everynight. I am on my 4th. mask now, this cpap therapy is costing HUNDREDS$$$, and now I am thinking of trying the Hybrid FF as the past 2 nights I have been sleeping with my mouth wide opened and I am snoring like I used to before I got on cpap therap ! I don't know how long you have been on cpap but, I do know it gets better after you find the most comfortable mask possible for you and get used to relaxing with the air flow rather than fighting it. Another thing I have found that helps relax me and seriously puts me to sleep is Pur-Sleep.. I have used it for the past 2 nights and have slept for 9 hours the first night and 8 hours the next ( that's when I have been waking up with my mouth wide opened), lol I guess the stuff has put me to sleep so good I don't even wake up at all! Strange but true.. The therapy itself also takes a couple of months to get used to as well. Goodluck

fredpb · Post by **fredpb** » Fri Oct 19, 2007 2:48 am

I also have major problems with sleep schedule.
Currently, I stay awake all night. Fall asleep from about 6am to 8am. I feel so tired I go to sleep again about noon, until about 5pm.

I have had sleep problems for many years, since becoming disabled due to mental illness.

I just go with the flow now. I don't have the concentration to read anymore, so it's music, recordings of stand up comedy (or XM radio comedy channels), computer, computer games, and TV.

One thing that helps is a DVR (digital video recorder), it records my programs automatically, so I always have something to watch, anytime of the day. I had one with the cable company before I moved. Now I have one with Dish satellite TV. It's a must.

sleepyWI · Post by **sleepyWI** » Fri Oct 19, 2007 5:54 am

Stick with it guys. My first month I probably averaged 2-3 hours a night. Gradually that turned to 4 and then 5. I went through a long period where I felt very much worse than before cpap. I have been doing this for a year now and I sleep 8 hours almost every night and feel great! Don't despair! You can do this.

I did go through 8 masks and it did cost me some $$$$. BUT...you can't put a price on your health. There is lots of good advice and support on this board. Use it. I never would have made it through those first three months without this place. Things that helped me:

1) a comfortable mask...for me it was the CL2 with pillows
2) Pur Sleep - but now I just buy my own oils at the hippy store (cheaper!)
3) Try to ignore the clock. Knowing that it is 2 AM won't help. If you wake up just make yourself comfortable and focus on your breathing and relax.
4) chatting with people like me....the chatroom if you have not used it often has great people in it who have been through everything you are going through.
5) time .... it takes time

Good luck!

allergyridden · Post by **allergyridden** » Fri Oct 19, 2007 6:45 am

I've been on Bipap for 5 weeks. In the beginning I only slept 4 or 5 hours & was even more tired than before. I'm lucky not to be working now, so I could get through this period. Now I'm sleeping 8 hours & feeling so much better.
I like the Nasal Aire II, don't use the headgear. It's very comfortable. I agree you have to invest in masks, use the auction.
It takes time to get used to the noises, the masks, even the breathing. But it is so worth it!
Use your weekend or off work days to make yourself stay on the machine. When you wake up, try laying there awhile & see if you can get back to sleep.
Buy a new pillow if you need to, get natural oils to try. But keep trying! If it's really uncomfortable for you, talk to the DME, maybe your machine needs adjusting, you may need more exhalation relief, or even a Bipap.

Slinky · Post by **Slinky** » Fri Oct 19, 2007 7:06 am

Well, you've taken the right first step, you've contacted your sleep doctor and DME supplier for help. If you don't get any then you at least know what kind of sleep "professionals" you've been stuck with.

And you still have the great folks in this forum to fall back on for help from those w/experience having to sleep w/CPAP equipment.

That being said, my first 30+ nights on CPAP were the most sleepless nights of my life. It did wonders for my disposition - NOT! I hated the whole world and everyone in it, including myself. But then things did start to gradually get better. Fortunately, I didn't have to spend a fortune to go thru several masks to find the one that worked for me. Since my CPAP DME was such a sheister I got my 02 from a different DME supplier and THEY were willing to let me try several masks at no charge until I found the one that has worked best for me.

You might try wearing your mask and turning your CPAP on whilst reading, watching TV, working a crossword or jigsaw puzzle. Anything to take your mind off wearing that mask and feeling that air pressure so that it becomes more second nature to you to wear them. That might help w/getting to sleep at night w/them on.

Do you have any underlying chronic pain issues that would keep you awake or keep waking you? Is reflux or GERD an issue for you? Do you have trouble breathing w/your CPAP? Are you a smoker or former smoker? Do you have trouble w/nasal congestion? Try to determine what 'might' be contributing to your difficulty w/sleeping w/CPAP.

I didn't notice what CPAP you are using? Is it a model that can provide full data or just compliance data or not even that? Have you checked the Mask Fitting tips under the Red Ball w/the Question Mark at the top of this page?

Hang in here. We'll sure try to help you get some restful sleep w/your CPAP and mask!!! It "is" worth it in the long run, honest injun!

Slinky · Post by **Slinky** » Fri Oct 19, 2007 7:11 am

Oooooh! You've got the Respironics M Series Auto w/A-Flex. The current creme de la creme of xPAPS! Are you using it in auto mode or in straight CPAP mode? Do you know your pressure range or pressure setting?? I'll bet there is more help here for you than even I thought given the xPAP you are using!!

Snoredog · Post by **Snoredog** » Fri Oct 19, 2007 12:30 pm

sounds to me like:

- you have insomnia that is keeping you awake
- insomnia may be made worse by mask comfort/machine
- you already have an autopap machine, is it set up correctly to "help" you get to sleep

when you consider the adverse side effects and adverse cost of prescription sleep medications, simple over the counter melatonin if far superior in my opinion. If you take the correct dose (requires a bit of experimentation on your part) it can help you fall asleep faster and stay asleep once you get there.

So it brings up a few questions;

- what issues do you have with the mask/machine? Is it the pressure? what is your pressure? is it the mask discomfort? what kind of mask are you using? is it a noise issue? or is it you just cannot turn off the days activity to fall asleep (called stress).

I would suggest you write all those issues down and then address them one-by-one, start with any discomfort. Hey if you need to take Tylenol PM every night go for it if it helps you sleep, you have to weight the good with the bad, no sleep and its effects are bad. Untreated OSA will lead to a heart attack or stroke, you can almost be guaranteed of that.

It takes the average person 4-6 weeks to become used to this therapy, the noise, discomfort from any mask etc. before they can sleep through the night, if you have only been at it a few weeks hour per night is about normal.

Since you have an autopap having it set up correctly is a must. You need to avoid the "gimmic" masks, there is a lot of them out there I wouldn't give you $.29 cents for. If exhaust noise is an issue and keeping you awake get a quiet mask. Soyala is a conventional mask that is nearly silent, no hissing about it and it seals great without the need to tighten the straps till your head turns blue.

To be successful at this therapy it is simply a matter of resolving all the little problems that pop-up, once you address those items you'll find you use the machine all night long.

This therapy is ugly, no doubt about, but so is laying in a hospital connected to a heart/lung machine. But you can take it off in the morning, besides who sees you sleep anyway the dog?

Dgrendahl · Post by **Dgrendahl** » Fri Oct 19, 2007 1:48 pm

I agree with many of the posters here who are suggesting that you give it time and work through the issues. When I first started on it I was awake most of the night. But as time has gone by, slowly I've gotten used to it and now I'm sleeping more hours as each day goes by. Something that has benefitted me immensely has been my elevating my head up approximately 12". Just don't give up!

hen3ry · Post by **hen3ry** » Fri Oct 19, 2007 2:01 pm

For as long as I can remember I've been a light sleeper and it got worse when we had kids. My wife and I started running a fan and now an air purifier in our bedroom for the white noise coverage it provides. When that isn't enough, I play quiet rain noises continuously on my MP3 player.

I also find diet and digestion have a strong effect on my sleep. Each of us is different in this regard, I imagine.

Being hooked up to a machine is awkward, to be sure. After you get through the initial stages, it can give you back your life -- but it won't solve all your sleep problems. Try to pull apart the sleep problems and look for ways of solving each one of them one by one. It's hard when you are sleep-deprived already, but it can be done.

Good luck!

Henry

6PtStar · Post by **6PtStar** » Sat Oct 20, 2007 2:50 pm

sleepyWI wrote: 2) Pur Sleep - but now I just buy my own oils at the hippy store

They most likely would not let me in there but my curiosity got the beat of me. What the heck is a "hippy store"? I went through the 60's, woodstock and all but I don't think I have ever seen a store with a sign out front that advertised "Hippy Supplies". In the 60's I thought they sold their supplies out of that flowered bus.

ApNoob · Post by **ApNoob** » Sat Oct 20, 2007 3:54 pm

6PtStar wrote:[They most likely would not let me in there but my curiosity got the beat of me. What the heck is a "hippy store"? I went through the 60's, woodstock and all but I don't think I have ever seen a store with a sign out front that advertised "Hippy Supplies". In the 60's I thought they sold their supplies out of that flowered bus.

I dunno. I just googled "hippie supplies" and got 778,000 hits.

skits · Post by **skits** » Sat Oct 20, 2007 7:56 pm

Boy, I need a new keyboard!

Anyway, I know hippie stores... the few still out there (it was once my dream to run one, but alas, no $ there anymore).

I don't want to get old. Problem one. I' ve managed to live 54 years fairly healthy. Menopause started (really life changing, in case any guys are reading this, so be good to your ladies, it is hell), had some dental work, gained some pounds, in a month (seems) I had high BP and now live with a machine (which hubby doesn't think I need) and I spent the last five years perfecting my getting to sleep which is all for naught now. I want to go the tallest building in the world, scream at the top of my lungs and jump (basically, JK).

I want to feel what everybody is talking about, but at the same time I have to work....I need to get some sleep. the only time I made it 4 hours was in front of the TV during the day.

I use a FF, but think maybe now that I'm "accustomed" to this %^$%^)(%$^)( I could try a nose deal.....but I've already turned in the nose pillows (what the heck of a name) and have a total FF. I have no problem with the air flow (I start at 5), but I can't take the weight of the mask. I have the RLS too, whatever it's called when you're sleeping.....
Okay....bitch is done... how are you guys doing>?

kennethryan · Post by **kennethryan** » Sat Oct 20, 2007 8:07 pm

skits wrote:I'm not sure what sleep doc will say, but I'm TRYING every night. It just gets to a point after an hour of lying there that it comes off. Often seems like more than an hour. I'm on my work week now, so I can't just lie there for three hours and not sleep. HELP!!

Others have said this but I want to also wish you the best and encourage you to hang in there! It took around 5 months for me to finally come to terms with the machine. I'm now on my 6th model mask, and finally found one that doesn't leak. I spent about a half year with a mask that was adequate, but still leaked fairly easily. Everybody's face is different, and every model mask is a different design, so if leaks or fit are part of your problem just keep trying new masks until you hit the combination that works for you. My DME tried pretty hard, and though he wasn't very skilled with fitting in the office he was happy to send me different variations to try (even sending me some alternate mask parts no-charge).

I did have considerable difficulty with the machine - I have a fairly high presure of 15cm. After reading posts in this forum I went to my doc and asked for a machine upgrade to get EPR (Resmed's version of C-Flex). That helps you get used to the machine by backing off a bit when you exhale. My doc also okayed me lowering my pressure to 12cm for a while to ease me getting used to it (he is also one of those apparently rare docs who is content to let me set my own pressure - he basically gave me a range that he felt would be safe for me, with some explanations as to why he picked the values he did, and had me check in with him periodically). So between EPR and the lower pressure it was easier for me to get used to it.

Also, for me a heated humidifier is an absolute must. It's not so important for everyone, but it is another parameter to try if you don't already have one.

BTW, I'm convinced that getting used to the pressure is not only a perceived comfort thing. Based on my own experience there is some training of the muscles in your chest and diaphragm to push against the pressure. It takes some time to develop that "muscle memory" that makes breathing against the pressure automatic. Another poster recommended wearing the mask while watching TV or reading; that never occurred to me but it sounds like a really good idea. Eventually you *will* get used to it because of that muscle training. For me there evidently was also some muscle toning needed - my ribs felt pretty sore in the morning for a while but that also went away with time.

Again, good luck, keep your DME and doctor involved and let us know how you are doing!

DME Reads Card, Calls me.

DME Reads Card, Calls me.

you and me both

It will get better!

Give it time...

Re: DME Reads Card, Calls me.

Mask	Humidifier