Well, got my CPAP yesterday and used it for the first time last night... boy am I exhausted!  Rough night.  Just as tired today as always.

I guess I was expecting "the best night sleep I've ever had"

How long did it take some of you to actually feel better?

What did your stats say?  Leak rate/AHI/AI?

Only a very fortunate few experience that miracle of restful, restorative sleep that first night on CPAP. For the rest of us *sigh* it takes time. And the time can vary from individual to individual.

My first 30 nights on CPAP were the WORSE nights of sleep I had EVER had! But I'm not bashful. Tho I had been given an appointment for 3 months in advance of starting therapy I contacted my sleep lab/doctor after 30 days and told them this flat out isn't working, do something or this stuff gets returned. Since I had a fully data capable CPAP and the doctor did actually look over the data printout I went along w/his raising the pressure 1 cm and that did help. But not one heck of a whole lot. I gave it 30 days and contacted them again. When they suggested raising my pressure another 1 cm after looking over the data printout "I" suggested either an overnight oximetry whilst on CPAP "or" a loaner autoPAP for a couple of weeks (I have COPD). The doctor opted for the loaner autoPAP which resulted in raising my pressure another 1 cm. I gave it another 30 days and altho I saw improvement w/each change I am NOT the most patient patient! I insisted on the overnight oximetry whilst on CPAP and sure enough that resulted in the addition of 2L of supplemental 02 along w/my CPAP. THAT is when I REALLY saw results! Not perfect, but .... sure was sleeping one heck of a whole lot better than when we started!!!! I actually felt human again!

I let things go longer than I should have before pushing the sleep doc and lab again that whilst I was doing one heck of a whole lot better I still needed naps now and then, too often, and I still wasn't quite satisfied that this was the best we could do. So thanks to my big mouth and not being able to leave things alone I was brought in for another evaluation and then a bi-level titration. VOILA! I was switched to a bi-level, w/o 02 supplementation even, and have been sleeping better and feeling more rested than I have in years!

Moral of the story: 30 days is enough time for any therapy (once you've found a comfortable, fairly leak free mask) and if there isn't definite improvement or if you are still having problems, the squeaky wheel gets the grease. The doctor can't "fix" a problem he doesn't know you have. No one has a more vested interest in your health than you do.

Patient, persistence, a sense of humor and some determination - plus NOT being bashful is the key to successful xPAP therapy. Give it a 30 day change to work and if you see no improvement or not enough improvement call the sleep doctor and tell him so. Ask for help. If it is mask issues ask your DME supplier for help. This suffering in silence bit is for the birds and the ignorant.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

BarryKaraoke wrote:

What did your stats say?  Leak rate/AHI/AI?

Stats?  I can get stats out of that thing?!?!?  Now, I'm excited.

CrohnieToo wrote:

Only a very fortunate few experience that miracle of restful, restorative sleep that first night on CPAP. For the rest of us *sigh* it takes time. And the time can vary from individual to individual.

My first 30 nights on CPAP were the WORSE nights of sleep I had EVER had! But I'm not bashful. Tho I had been given an appointment for 3 months in advance of starting therapy I contacted my sleep lab/doctor after 30 days and told them this flat out isn't working, do something or this stuff gets returned. Since I had a fully data capable CPAP and the doctor did actually look over the data printout I went along w/his raising the pressure 1 cm and that did help. But not one heck of a whole lot. I gave it 30 days and contacted them again. When they suggested raising my pressure another 1 cm after looking over the data printout "I" suggested either an overnight oximetry whilst on CPAP "or" a loaner autoPAP for a couple of weeks (I have COPD). The doctor opted for the loaner autoPAP which resulted in raising my pressure another 1 cm. I gave it another 30 days and altho I saw improvement w/each change I am NOT the most patient patient! I insisted on the overnight oximetry whilst on CPAP and sure enough that resulted in the addition of 2L of supplemental 02 along w/my CPAP. THAT is when I REALLY saw results! Not perfect, but .... sure was sleeping one heck of a whole lot better than when we started!!!! I actually felt human again!

I let things go longer than I should have before pushing the sleep doc and lab again that whilst I was doing one heck of a whole lot better I still needed naps now and then, too often, and I still wasn't quite satisfied that this was the best we could do. So thanks to my big mouth and not being able to leave things alone I was brought in for another evaluation and then a bi-level titration. VOILA! I was switched to a bi-level, w/o 02 supplementation even, and have been sleeping better and feeling more rested than I have in years!

Moral of the story: 30 days is enough time for any therapy (once you've found a comfortable, fairly leak free mask) and if there isn't definite improvement or if you are still having problems, the squeaky wheel gets the grease. The doctor can't "fix" a problem he doesn't know you have. No one has a more vested interest in your health than you do.

Patient, persistence, a sense of humor and some determination - plus NOT being bashful is the key to successful xPAP therapy. Give it a 30 day change to work and if you see no improvement or not enough improvement call the sleep doctor and tell him so. Ask for help. If it is mask issues ask your DME supplier for help. This suffering in silence bit is for the birds and the ignorant.

It was all just so weird.  I had no idea if the mask was too tight, if it was too loose, if the amount of CO2 vent was too much...

Add to that the odd sensation of just having to wear the mask and you've got the makings of a restless night.  Moreover, I am a stomach sleeper and, with the mask I have, I have to either sleep on my back or my side.

The good news out of all of this is that my bed partner told me that I did not snore nor did I thrash my legs.  Cool.

Now, as a complete aside, I find it extremely humorous that the whole thing looks like one giant hookah or water pipe.  I am surprised that CPAPs are not a big hit on college campuses.  Can you see it?  It would give a new definition to "hosehead."

I see the sleep doctor again July 29th.  If I am not feeling well by then, I'll become a squeaky wheel!

Thanks for all of the advice and insight!

Ken

BarryKaraoke wrote:

What did your stats say?  Leak rate/AHI/AI?

Barry:

I'm not sure my machine provides all of these stats.  Leave it to my insurance company to authorize the cheap one!

I have the Sleep Style HC233; it's made by Fisher and Paykel.  It provides humidification level, altitude, compliance time, and setting.  I don't see anywhere within the manual or on the product website how to obtain leak rate or AHI.

If anyone is familiar with this machine and knows how to extract this type of data, I'd be greatly interested in some help.

Thanks,

Ken

Hi Ken,

I too am a stomach sleeper, at least I like to fall asleep that way. I can do it pretty well with my Quattro FF mask.

I also had some problems with leaks the first week, I then decided to lash the mask tighter. I get no more leaks, but am left with red marks on my face for the first hour or two of the day. A hot shower mostly takes them away.

Hang in there...it gets better.

Neil

onewaypockets wrote:

Hi Ken,

I too am a stomach sleeper, at least I like to fall asleep that way. I can do it pretty well with my Quattro FF mask.

I also had some problems with leaks the first week, I then decided to lash the mask tighter. I get no more leaks, but am left with red marks on my face for the first hour or two of the day. A hot shower mostly takes them away.

Hang in there...it gets better.

Neil

Thanks, Neil!!

Hey Ken,

So hows it going the first week?

Neil

onewaypockets wrote:

Hey Ken,

So hows it going the first week?

Neil

Neil:

To be perfectly honest with you: it's not been easy.  I only had one night where I slept all the way through and two nights where I had to take off the mask at around 3am.

Not ready to give up yet!

No, no don't give up!  I have only had my c-pap machine with nasal pillows for going on 3 weeks now.  I am finally getting used to it.  The first week I was only able to keep the 'mask' on for maybe 2-3 hours.  My respiratory therapist said that was fine and that I would gradually get used to it and leave it on longer.  I did have my pressure lowered from 10 to 8.  I was feeling like I was suffocating.  I took my smart card from my machine into my RT at the 2 week mark and got a B- on compliance (mainly due to taking it off in the middle of the night) but my AHI number was great.  I am anxious to take the card back in and see what my numbers are after changing the pressure to 8.  Who knows, they may need to put it back at 10.  I am seeing a difference in that I am not as tired in the evenings or afternoons.  I used to fall asleep in the car while driving in the afternoon.  YIKES!!  That's when I knew something had to be done.  I am now struggling with feeling like a brick when I get up in the morning.  My RT says it's because I'm finally getting deep sleep.  For the past week now I've been wearing the mask every night and keeping it on for most of 7 hours.  I used to dread going to bed and now I look forward to a good night's sleep.  My husband also has a c-pap.  He had his for about a month before me and he's seeing real improvements too...his mood, his level of energy, etc.  We move our hoses aside and kiss each other goodnight every night now!  We are quite the sight to see!  

Hi Ken,

Can you say a little more about why you take the mask off? Can't sleep? Feel trapped? Have you tried a mild sleep aid like Tylenol PM or over the counter Melatonin?

The one thing I see in many of the posts here over and over is anxiety. People can't relax, too many thoughts, too much stress from a modern lifestyle.

But somehow you will get this to work.

Personally I take 600 micrograms Melatonin and my doctor has prescribed 3mg of Tenex (both one hour before bedtime). He says I'm borderline anxiety syndrome, he based this on saliva neurotransmitter test (brain hormones). I sleep really well and have no problems. However, in the sleep lab the tech, although a nice guy, put the mask on me...I pretty much had a panic attack. I couldn't breath, the tech told me "relax, you can breath". I took me about 5-10 minutes to realize I could breathe and finally I went to sleep and had no more issues.

Hope this helps....keep posting and someone will find the answer for you...don't give up on CPAP, it's way too important to your life.

Neil

My husband takes a Tylenol PM sometimes before bed.  He takes it about an hour before he plans on hitting the sack and says it really helps him to relax.  I don't need anything to help me relax.  Once I hit the pillow, I'm out like a light.  If I were to take something like that, I'd be too groggy in the a.m. to work.  I had a really great sleep tech.  He told me the hardest time of wearing the mask was going to be the first 10 minutes.  He said that was when my sinuses would rebel against the pressure.  I had no trouble with my sinuses though..never have.  It was so nice of the tech to stay with me for those first 10 minutes.  He just sat by the bed and talked calmly to me, helped me to relax, and demonstrated how fast/slow my breathing should be.  When he was sure I was relaxed he then left the room but told me he was just a hand wave away if I needed him.  It was the best night of sleep I've had with the mask...certainly the longest night.

I am not sure why I am taking the mask off; I really never remember doing it.

I do know that when I first put the nasal pillows in, I feel like I can't get a really deep breath.  I have to inhale and exhale really hard to feel like I'm getting enough air.  I tried using the ramping feature, but that made the whole I-can't-breath feeling worse.

My bed partner told me that I was mouth breathing one of the nights while I was using CPAP.  So, I put some bandage tape across my lips.  That was the first night I took the mask off.  In the A.M., I found the he mask and the tape placed on my nightstand.

Also, because I have a deviated septum and allergies with congestion, I use FloNase and a Breath Right Strip each night.  I also use an over-the-counter sleep aid to help with all of the new sensations and distractions at bed time.

It sounds like a full face mask might be a better choice. It might be that when you get stuffy at night, you just take it off. They tried to push a nasal mask on me, even after I told them I am mostly a mouth breather. During the day I can breathe through my nostrils fine, but when I lie down not nearly so well. The sleep guy said that perhaps I can retrain myself to breathe through my nose! Right! I told him I've been a mouth breather since I was 12....not going to change. That was the end of that conversation.

I am really happy with my Quattro full face mask, perhaps you can switch and give it a try? I really feel you are close to making this work.

Neil