Need help adjusting to CPAP

[ChicagoGranny]

Do you have AC in the bedroom or not? If you're dealing with an unairconditioned bedroom in MD at this time of the year, yeah, it's going to feel like you're sleeping in a swamp if the humidifier is turned on at all. Heck it's going to feel like sleeping in a swamp just because of the mask.

He has AC -

My temperature in the room is about 74.

You don't get to 74 in MD summers without AC.

[Petrodon]

Yeah, she is right, the AC in the room is on, it's muggy here in summer so I shouldn't need the humidifier. I had a total failure last night, I lasted about 20 minutes with the mask on, got up about three times and eventually fell asleep without the mask (again). Also I have tried to get a hold of someone from my DME provider about mask refit but have gotten nothing back yet. Is it possible to change to a new DME?

[robysue]

Petrodon,

You may need to crank the AC a bit more at night.

Here in Buffalo we don't have weeks and weeks of hot muggy weather. But I grew up in Va along with spending weeks on end in Arkansas. And I spent most of the first 20 years of my adulthood in central Ill. So I know something about hot muggy weather that won't let up for weeks on end.

When we do have a stretch of the hot muggies up here in Buffalo, I find that I have to have the nighttime AC set to 70 or 71 in order to sleep comfortably with my BiPAP. At 74 I'm "not comfortable" and at the usual recommended night time setting for AC of 76-78 I'm genuinely miserable. Yes, it costs a lot more to run the AC at 70 than it does at 78. But as hubby says: It costs even more for me to not sleep night after night after night.

[ChicagoGranny]

Is it possible to change to a new DME?

Sometimes. Check with your insurance company.

But a new one may not be any better. Is there an assistant at your doc's office you can ask for a recommendation on switching?

[Kimo]

Petro,
I think I have experienced most all of your issues. I have been using CPAP now for ten years. My apnea is severe; my pressure is currently adjusted to around 15.5.
At times, it was a real struggle with the chinstrap problem. Waking up in the morning with the inside of your mouth as dry as the Gobi desert is not fun. I started putting on my chinstrap as loose as possible and for the last 6-7 years, I have not needed it at all.

How I dealt with my suffocation anxiety. I make sure I am ready to go to sleep before going to bed. When I retire, I take several, sometimes many deep breaths through my mask then exhale through my mouth. This seems to help relax the anxiety of suffocation and claustrophobia.

Itches; I still get them every night. I have tried lotions, creams and everything under the sun. Fortunately once I am asleep they go away. My mask had a lot to do with the itching. Now I am using a ResMed Mirage Activa Nasal mask. The tendency at first was to cinch up on the straps, then I realized by easing up on the straps it got WAY more comfortable and my itching has been dramatically reduced.

To Ramp or not to Ramp. Personally, I never liked the ramp feature, it seemed to increase my anxiety of suffocation. Now I am full tilt boogie right out of the chute.
Stomach sleeping. Shortly after beginning CPAP I converted to side sleeping with a nice high pillow(s).

Stick with it, it will get better over time. The adjustments you have to make are well worth the effort in the long run. Sleep apnea is one of those conditions that can be extremely dangerous to yourself and those around you.

Prior to CPAP I was falling asleep at my desk, while I was driving, while watching TV, during dinner. I was completely exhausted all the time. After my sleep study was completed, they said my Blood Oxygen level was down around 46% and my apnea events were lasting as long as 2-1/2 minutes. Today I will not even take a nap without one of my machines.

Good Luck, Kimo

[Petrodon]

Thank you all for the continued support. It has been so helpful all of the kind advice. My plan for tonight is to reduce the temperature to 72 and try the larger cushion so it is off if my nostrils. I have not yet had any feedback from Apria about getting a new mask and that is frustrating my next mask will be a pillow mask based in robysue's recommendation. Does anyone have any faves for the claustrophobic?

[robysue]

Thank you all for the continued support. It has been so helpful all of the kind advice. My plan for tonight is to reduce the temperature to 72 and try the larger cushion so it is off if my nostrils. I have not yet had any feedback from Apria about getting a new mask and that is frustrating my next mask will be a pillow mask based in robysue's recommendation. Does anyone have any faves for the claustrophobic?

The most minimalist nasal pillows masks commonly carried by brick and mortar DMEs are the Resmed Swift FX (with or without the Bella Loops), the Resmed AirFit P10, the F&P Pilairo, and PR Nuance and Nuance Pro masks.

Another mask that may be of interest is the Airway Management TAP PAP Nasal Pillow CPAP Mask that uses a Boil-N-Bite "stability" plate that goes inside the mouth (rather like an OTC "nightguard") that holds and stabilizes the pillows without any headgear at all.

[bv1800]

I've only been using my CPAP for 1/2 a year. When I started using it, I would go to bed early (30 min or more) and read while using the CPAP. The time allowed me to get used to the sensation (especially having to actively exhale) & reduce the suffocation feeling. Not sure if doing something like that would work for you, but it might be worth a try.

[Nozzelnut]

Have you tried any sleep aid medicines?

I have a difficult time falling asleep in general. I have an extremely hard time falling asleep with my FFM on my face. I need a little extra help doing that and found relief in the form of ibuprofen PM. Basically ibuprofen with Benadryl added. It helps me turn the switch off, and fall asleep so I don't notice the extra stuff as much. A crutch; maybe, but it works for me. Might be worth a try.

I've also read a couple of studies that say we should try to sleep in temperatures less than 65. Might be worth turning down the thermostat to see how that works too.

[Petrodon]

So my compliance is basically shot, even last night when I got home late and was exhausted I could only keep the mask on for an hour. I am thinking part of my issue might be the lack of a chinstrap which I abandoned over a week ago. I don't think it is causing me issues except I am getting the feeling that when I reach deep sleep my mouth opens and the air exiting my mouth wakes me up. Maybe a full face mask would work better, is there a place I can get one without bothering my terrible DME for it? My next call is to my insurance to see if I can change to some other DME.

[palerider]

So my compliance is basically shot, even last night when I got home late and was exhausted I could only keep the mask on for an hour. I am thinking part of my issue might be the lack of a chinstrap which I abandoned over a week ago. I don't think it is causing me issues except I am getting the feeling that when I reach deep sleep my mouth opens and the air exiting my mouth wakes me up. Maybe a full face mask would work better, is there a place I can get one without bothering my terrible DME for it? My next call is to my insurance to see if I can change to some other DME.

cpap.com will fix you up!

[englandsf]

Simple idea - work on clearing your nasal/sinus passages THEN try a nasal pillow mask. Wash your nose out 2-3 times a day (and use a cortico steroid if you must) then try a minimal pillow like the P10, Nuance or FX. They are so light and open compared to FFM the dread may be gone quickly. Keep humidity as low as you can and turn off humidifier/hose heat - use the system to keep your passages slightly dry. Good luck.

[Petrodon]

I thought about using cpap.com as my DME, their pricing is up front and they have a great return policy. I suppose I will have to get my prescription from my doctors office.

I am not having too many issue with congestion BTW (thankfully) but the sensation of suffocation is pretty bad. As a test I wore my chinstrap last night and I had better compliance than I have seen in days. I liked robysue and pugsy's suggestion of ditching the strap but I think it only helped me to fall asleep, but not to stay that way. I am hoping for full compliance tonight.

[Petrodon]

Quick update: I figured out that though the suggestion of ditching the chinstrap worked out for some people, my claustrophobia issues made my compliance worse because I would remove the mask in my sleep when my mouth opened and my pressure dropped. So I tried the chinstrap again, same result, good AHI, bad compliance. Ultimately I was able to get into my DME and got a Mirage Quattro Full face mask. I decided to give the full face mask the old college try after I ordered a pad-a-cheek liner for it.

The difference in my comfort was great. Without my nostrils blocked my anxiety about the mask lessened and I could finally sleep. That is until I saw my therapy data. With the full face mask my AHI skyrocketed from averaging between 0 and 2.1 to a whopping 19.55 the first night. NOT GOOD. And I only kept the mask on for two hours still.

So one step forward and one step back. I will give it another try tonight.

[Tatooed Lady]

there's a quote out there somewhere...akin to "one night's data does not a trend make" or something like that. I saw another poster's thread about her AHI suddenly dropping, and it confused her. It was pointed out in part of the thread that the SH graphs showed spikes that are probably related to mouth breathing. So...its probably a bit early to freak out.