Newbie is failing -- PLEASE HELP!!!

I have been reading this wonderful site with great interest, and I would so appreciate any suggestions that will help my CPAP setup work. I feel like giving up, and I am giving up for tonight, but I want to make this work.

This summer I saw a sleep MD b/c I was waking up several times a night with horrible dry mouth. It was utterly wrecking my sleep – and had been for a while. I thought it might be a sign of OSA. After my study I was diagnosed with mild to moderate OSA (RERA Index 6.6, Hyp index 6.9, Apnea index 1.1, minimum 02 was 92 if I am reading this right but mostly quite high) with something like 160 PLMs happening the first half of the night (It was 320 during a later titration!), hardly any after that. At home, I failed terribly at tolerating my mask(s) (a triangular nasal one, and a nasal pillow) partly because the air would make me a puffer fish and gush out my mouth. I tried a chin strap but that didn’t work to stem the flow that well.

The biggest problem, though, was that I could never sleep more than a minute or so with CPAP (it was on Auto mode for the “titration” Apria was doing) b/c I would wake up gasping for air, almost like I had just been choked, in a sort of panic, with my heart racing. I would rip the mask off my face and swear I’d never use it again. It’s almost like the air going in is choking me. It’s fine ‘til I actually start going to sleep, them it chokes me and I awaken in quite a state. I gave up and didn’t use CPAP for a month or so.

My doctor decided to do a lab titration a few weeks ago. I came out with a RERA index of 5.6, a hypop index of 2.5, and an apnea index of 0.1 – not a huge improvement. They did it with a Quattro, and I took an Ambien to get through the test (as I did the first night, but never do in “real life”). I was prescribed a pressure of 8.

I was very happy because during the study I didn’t wake up with that chokey panicky feeling but that may have been the Ambien (although I also hallucinated – thanks to the Ambien, I think -- that the sprinkler on the ceiling was a face and then two dancing happy people with shiny noses and then a giant mirror!). So I recently bought a Quattro, and couldn’t really sleep the first night b/c of the leaks and the weirdness of moving with this thing. I took a sedative I had been prescribed for a little dizziness I had a couple of years ago. I didn’t sleep great, but at least I made it thru the night without choking. I thought I was on the road to success. I was tired, but had made it thru.

But the next night, I decided I can’t do the sedative thing (I don’t like doing meds), and I did the chokey-pokey again, and woke up after a minute or two of sleep)with that horrible scary sensation of something not letting me breathe, heart racing etc etc. I tried again, but had a horrible night as I lay there unable to sleep b/c it happened yet again. I gave up and was soooo tired.

I gave up for the next two nights, got “caught up” on sleep, and tried last night, with the same results. I am soooo tired, and quite discouraged. I am not normally a tired person, but CPAP is slaying me!

I do also have lots of Quattro leaks, and can’t seem to figure that out. And the air from the center of the upper mask blows on my hubby when I face him. I feel bad so I cover my head with a sheet so he doesn’t get an eyeful of air. Is this where air is supposed to come out of a mask – like a unicorn, kind of? This probably isn’t the mask for me, plus it feels “burny” around the rim after it’s been on for a while. I wonder how to find the right mask without breaking the bank?

As for the PLMs, my ferritin turned out to be low (23?) so I am taking iron for a month or so to try to increase it. I’d like to avoid the dopaminergics that are often prescribed for this. My hubby has terrible PLMs that often keep my up for a long time before I can “dive in” to sleep between his kicks. He swears I don’t have it, but he sleeps well despite this, so he wouldn’t know.

I am lucky enough to have a very nice, responsive sleep MD, so he is willing to work with me to get me where I need to be. I'm considering a dental device, and he supports that as an alternative or a supplment. He’s not thrilled with my titration numbers either. He doesn’t have the kind of day-to-day practical knowledge people on these boards do, though, so I would greatly value any advice that could help!

I didn't digest all of you post -----

Have you been checked for sjogren's syndrome?

Masks vent to eliminate the possibility of CO2 build up so this blowing out is standard. Some ppl have used an erect pillow between partners to block the wind.

Have these leg movements been adequately addressed by your doctor so they are under control yet - you mention the testing etc. but has there been a follow up yet?

I did get a sjogren's test, and it was fine. My husband sleeps with his mouth gaping open and has nary a complaint of dry mouth, so I guess it is odd to have such dry mouth from sleeping with a mouth open. The chin strap prevents that for the most part, fortunately.

PLMs are probably not under control yet. I just started taking iron a week or so ago, so it will be about a month or so..

Have you tried other masks such as the Ultramirage FF? It may be a better fit (once adjusted).

Turn off auto off on your machine. Do a search on this forum for auto off to learn why and how.

Go to https://www.cpap.com and use their online sizing tool for the FF Quattro mask. I found that I was trying to use the wrong size. The correct size for me does not leak.

If you have not done so, try using the ramp feature on your machine.

I too cannot take Ambien for the same reasons. Try Equate Sleep Aid Tablets (Unisom) tablets from WalMart -- $ 4.00 for 32 tablets.

I too have and am still having trouble adjusting but it does get better, and better, and better ......
Luck, Norm

I will check out that sizing chart. They tried an XS at the sleep ctr but I ended up with a small. I'll also investigate that other mask and those sleep aids. Thanks! I have used the ramp feature, but I prefer knowing what I'm "getting into" right away. The Auto mode has been off since the titration, and it's set at 8.

My major problem -- beyond ill-fitting mask and getting used to the whole thing -- is the frightening choking thing that happens, like I'm getting no air while it's being forced in. I just have no idea what is happening, only that it results in my heart pounding and me ripping off the mask as fast as possible so i can breathe again. I am fine with the mask while awake; it's when I go to sleep that the scary stuff happens.

Fortunately I had a great night sleep last night without my CPAP (but with the chin strap, which helps keep my mouth shut) and I feel refreshed. I wonder, with my numbers, how much my body really needs CPAP? I will keep trying, and thanks for the advice!

By what you've described you have what it takes to succeed. You are detailed and want to succeed.

I'm assuming you've eliminated caffeine and other stimulants that may reduce the quality of your sleep. I'm also assuming that you do restful activities and don't go out for a couple of hours speed skating just before bed : ) So a couple of questions.

When you lie down for the night and put the mask on, do you feel calm or is your heart beating faster in anticipation of putting the mask on? Do you have feelings of claustrophobia when you put the mask on? Or, rather is your heart beating faster anticipating a repeat event where you wake up feeling like you're choking?

Hi Gasp,

Yes, I try to do all the right sleep hygiene. I've even trying to avoid my morning cup of green tea for a while in case I'm super sensitive to caffeine. My PSG showed that I have tons of random awakenings not related to legs or breathing every night, so I don't know what's going on with that. Some of it is probably an artifact of being in the lab environment with wires and tubes everywhere and knowing that I'm even being videotaped!

But when I go to sleep with the CPAP at home I am ever hopeful. I'm pretty relaxed, I don't mind the mask that much (I scuba dive, so I'm used to my face being tucked into masks and hoses!), and I don't feel anxious. That's what's so disappointing and weird -- that I feel my body relaxing and drifting into sleep, and moments (or maybe a minute or two?) later, I'm choking and gasping. When I had the machine on Auto, I thought maybe it was blasting on the air too fast and freaking out my breathing, but now that it's a steady 8, I can't figure it out. My doc thought maybe it has to do with the idea that I might be more of a UARS person, but after we got off the phone I didn't really understand how that would affect things.

Thanks for any thoughts!

What I was refereing to is to turn off the auto-off feature on your machine -- not wheather the machine is set in APAP or CPAP mode.

Here is what snoredog wrote on the subject:
"I think you need to go through setup on the machine and check all settings. Never rely on someone else to setup your machine.

Many of these machines have a feature called Auto Start, SmartStart and Auto:Off and basically very bad features, while the Auto "On" is a very good feature the part of the feature that automatically turns the machine off are STUPID. They are stupid because if you start to mouth breathe or develop a large leak where the machine cannot sense your breathing, the stupid machines will shut off.

If you are using a Full Face mask with a flapper-style anti-asphixia valve when the machine shuts off so does your air, when no air is coming from the machine, that valve in the mask will switch to "by-pass" mode, so you are breathing in and out of the elbow by-pass valve not from the hose/machine. Since the by-pass valve in the mask has flipped, the machine CANNOT sense your breathing and therefore the "Auto On" feature fails to detect your breathing.

The result is you wake up after an apnea event and find the machine off. Very STUPID features, people that design these machines are morons, they have never actually used one themselves.

My suggestion: Disable Auto: Off on the Respironics, you cannot disable Auto On nor is there a reason to.
On the Resmed machine, disable SmartStart, if you select "FULL" type mask it will automatically disable that feature.

It is not really that hard to Press the On/Off button when you go to bed and press it again when you get up. So look carefully
and the mask you are using and how the machine is set up.

TEST IT!: Test it during the day, put on the mask, see the machine start, then remove the mask and lay it on the pillow with the machine running. Use your watch to see how long it shuts off or alarms sound. If NO alarms sound then it will probably shut off.
I would enable any Mask "off" alert or alarms, that way if it is a large leak or mouth breathing it will let you know. "

Luck, Norm

Do you have C-Flex on? If so, turn it off.
Some people have "breath stacking" in respone to C-Flex - something goes badly out of synch between them and the machine.

O.

Well, before you mentioned SCUBA I was going to suggest putting on the mask during the day while watching TV or reading or some other "sit down" activity to get used to the mask idea, but if you do SCUBA you already know about the feeling of restricted breathing and having a mask and hose attached......The xPAP shouldn't cause you to "gasp for air" -- once you get used to it, you'll hardly even notice any pressure at all -- it's just there to open your airway, so it's not like pumping you up...

If your DME will allow you to try masks, take advantage of that service. Try as many as they'll let you get away with ....
Masks are the holy grail of xPAP. Finding one that works can be quite a challenge. A mask fitting properly is also very important. My first mask was a Medium ComfortGel -- turns out I need a Small.....
Since you're apparently a mouth breather a Full Face mask is the most appropriate. Some use nasal interfaces and tape or use polident strips or chin straps -- some method to keep your mouth closed. I actually taught myself to not mouth breathe - it took a few months and a conscious effort to notice when I was breathing through my mouth. I have severe allergies but rarely have a clogged nose (better living through chemistry)...But, if you can tollerate a FF mask, that's the way to go....

As for venting -- yes -- all masks vent in some way to ensure the CO2 you exhale is expelled. My ComfortGel vents through the elbow fitting and my headrest vents upward just above where the pillow thingy attaches....I'm not familiar with the Quattro and how it vents, but I'm sure there are a lot of others here that can give you some input about that.....

Keep at it -- you certainly appear to have the right attitude for success. You're not failing!!!!!! You are facing some challenges, but it's not a failure!!!!
Oh yeah.......Welcome to the forum!!!!


Keep us up on how you're doing -- we're here to help any way we can!!!
Take care
cheers
goose

Thank you all for your thoughts. Papdad, that was an interesting read about the auto off. I will check that out. My problem is the opposite, though, that the air is rushing in at me when I wake up choking on it. But the auto thing is worth looking into for future prevention! Ozij, I will try it with C-Flex off or down. I went back and looked at posts about this and at the Wiki page about breath stacking, and it sounds like this could be a possible cause. Oh would that be wonderful if it were this "simple"! Goose, thank you for the nice welcome! That's a fancy aircraft! I wish my health plan allowed me to try on masks 'til I got the right one, but it's very limited. If only we could try out masks like we try on shoes!

I tried to turn off C Flex, but I can't. I can only take it down to a level 1. I think I need the "professional" manual in order to do that. i haven't been able to find info online about going in and changing these settings. My doctor doesn't care if I have c-flex or not -- he left that up to me. So if anyone knows how to get into the prescription settings for the machine I list below, I'd love to know the secret!

Respironics REMstar M Series
To get into the clinician's setup mode in a REMstar M Series CPAP machine or a BiPAP M Series CPAP machine follow these steps:
unplug the power cord from the back of the CPAP machine
lift the LCD cover and press the two buttons closest to the back of the CPAP machine
while pressing the two buttons, plug the power cord into the CPAP machine
You'll hear two beeps and then you'll see the word setup in the lower right corner of the LCD screen. When you select setup you'll be in the clinician's mode where you can adjust every feature of the CPAP machine, including the pressure setting. Below is the list of settings you can cycle through on a REMstar Plus M Series:
CPAP Pressure (only in provider setup mode)
Altitude
Fine Pressure Adjustment (only in provider setup mode)
C-Flex Setting
Ramp Time
Ramp Start Pressure
Mask Alert
Auto Off
Patient Reminder (only in provider setup mode)

san_fran_gal wrote:Thank you all for your thoughts. Papdad, that was an interesting read about the auto off. I will check that out. My problem is the opposite, though, that the air is rushing in at me when I wake up choking on it.

If you stop breathing -- apnea -- then the air cannot get in -- but the XPAP is supposed to keep airways open. You may have mentioned this earlier but why are you using an APAP machine in CPAP mode ?