Support needed - 2 weeks into APAP & can't get comfortab

[Shedahl]

Hello all,

I posted my background and sleep study results here on 8/8/06. I'd just had my sleep study done and was a few days into treatment. I got a lot of good advice, and have read volumes about sleep apnea since then. I'm still not sleeping more than 1-2 hours at a time with my mask on ... there was one time that I slept 4 solid hours with my mask on, and I've never been able to recreate that night. I think I was just, plain exhausted that night.

Since that original post, I've been switching off between the Mirage Swift (for naps and sleeping on my back), and the Breeze (for side sleeping). Now I've been thinking about getting an Aura, based on reading posts here, seeing what other people are using, and reading reviews. But I don't want to spend the money to buy another mask that won't work. I've read that some people switch off during the night, and I'll probably be one of those people.

I don't have software to look at my info. on the REMstar, but I do look at the reading on the little window when I wake up. I've seen: 10.0, 10.5, and 5.0 - mostly 5.0. Does 5.0 mean that my mouth has been open? I know that 10.0 & 10.5 means that it's working. I haven't seen anything higher than that.

I've got a BOX full of stuff on my night stand that I've acquired to try to help with fitting and comfort: various nasal gels, creams & ointments; elastic; padding, moleskin & scissors; flashlight; J&J waterproof tape, band-aids, & a couple kinds of first aide tape. I also bought a Pappillow, which I like. Some of this "stuff" has helped with the seal and comfort and my TMJ issues ( can't use any mask that presses on my mouth or cheeks over my teeth), but none of it has increased my total sleep time. Many people say that their nares toughen up in a day or two, or a week or two, and mine have not. I guess I'm one of those overly sensitive people.

I never had trouble getting to sleep - and still don't. I had previous problems with staying asleep, and now it's just worse, and I feel even more tired than before starting treatment. I just can't get comfortable. I can fall asleep, and sleep for 1-2 hours, and then I wake up and fiddle with the seal & straps & my pillow. I just can't get back to sleep with the mask on. I'll take it off and sleep another hour or two in bed. I'm getting 8 hours of total sleep per day, with an average of 4 hours being in bed at night, and 4 hours in a recliner or actually sitting up on the couch during the day. I've even fallen asleep sitting up at the computer. I've also tried moving the APAP back and forth from the bedroom to the living room, and telling myself that I just won't sleep at all without the mask on ... and then my nose is sore and I'll take it off. I can always sleep for 3-4 hours straight during the day with the mask off in a reclining position. I've also kept myself up all day (no naps), and tried to sleep only in bed with the mask on, but I give up and take it off ... or I have something that I need to do, and be awake for it, so I'll take a nap during the day again.

Sometimes my mouth is dry, so I've tried taping my mouth shut in various ways, which feels creepy and claustrophobic. They tried a mask on me that covered my nose during my first visit to my DME supplier, and that was extremely claustrophobic, so I can't imagine that I'd be able to wear a full mask that also covers my mouth.

I don't even know what I want to ask at this point. Anything on my head and face just seems to irritate me - physically and mentally. I have follow-up appointments in a week with my sleep doc (a sleep & pulmonary specialist), and with a DME appointment following. I have a list of complaints to tell the doctor, and I'll discuss my medications in detail with her then, and I'm going to get a referral to try acupuncture for some of my other "issues"; but I don't know what else to ask for, if anything. I'm hoping that I have enough data for the doctor to figure out what's going on - there's 40 hours total on the machine so far - not compliance, by any means. I've got to get this straightened out and get back to work. I'm NOT feeling in shape for job interviews!

One question for any other claustrophibic people out there: I'm wondering if I get a full face mask (so I have a backup for flu/cold season, if nothing else), if you can get used to it. Or, maybe it isn't such a big deal, once you close your eyes at night, and aren't looking at it on yourself in a mirror.

I guess I just wanted mostly to vent, and get some support to keep at it. Maybe it just takes more time to get used to it for some people. Is there a light at the end of my tunnel?

Thanks,

Shedahl

[DreamStalker]

Have you looked into the Hybrid? It works quite well for some and seems to be a working option for people with a round face and/or full cheeks ... not as good for people with long narrow and/or angular faces.

Keep at it nevertheless because the alternative is not pleasant.

wishing you the best of dreams ...

- roberto

[fstanmyre]

You need to get the software. I'm in the group that just doesn't see how you can diagnose and deal with your apnea without the feedback from the machine's software. Your problems could be as simple as mask leaks or the wrong pressure settings but how can you know?

[Goofproof]

It sounds to me like you have leaks, Taping or a FF Mask are the answer to getting the treatment, also I know you need 8 hours of sleep most of us do.

Recliner time makes it harder to sleep at night, I know it's nice, but night is where you get into deeper levels of sleep. It's not easy but if you tell yourself it's going to work it will. Jim

[snoregirl]

What is your APAP set at (range). You mention seeing 5.0 and 10.5 when you wake up. I can't sleep at 5. I need 7.5 or more to feel like I can breath.

I know you have seen 10.5 when you wake up but you also mention seeing mostly 5.0. Is it possible that you wake up because it is too low? I would boost my min setting to 7 or 7.5 and see if you stay asleep.

I am a swift user all night and recently have been able to side sleep with it.

I use a strap of sorts, not a store bought chinstrap but an ace bandage around the chin and up to the top back of the head. It seems to stabalize the swift and keep my mouth gently closed in addition to taping.

I have had a couple nights where I went without the tape successfully (I felt I might need to cough or clear my throat excessivly, I think from allergies) and I did pretty well without the tape those couple times, but other times I haven't done as well -- so I tape every night unless there is a specific reason not to.

I think the swift (or possibly another pillow system) is the least confining thing if you are claustrophobic.

Can you get used to a ff mask? I had an ultra mirage that I started with and it was ok then. Having been on the swift now I really hate trying to use the ff mask now. Not because it isn't good, just the claustrophobia and it seems too hot.

About stuff pressing on teeth. I know that my swift if I wear it too tight tends to press on my upper lip and against my teeth. Maybe that is bothering you too? I can't say if other pillow systems do the same thing. I can usually wear the swift loosely enough with my strap that I don't feel pressure on my teeth.

[Shedahl]

Thanks to all for the suggestions and support. I really appreciate it.

fstanmyre, The DME set my Auto at 5-15 - according to my prescription - for the 1st 30 days. I was told that they'd record info. for the first 30 days, download it at the doctor's office, and then switch my machine ... didn't know at the time that there were any options for me to get my own software or monitor my own progress. When I go in for my appointment on the 31st, I do intend to keep the REMstar Auto, and look into my own software.

Do you think that I should change any of the settings at this point, without talking to the doctor? I'd like to double-check the settings, though. I know I've seen instructions for the REMstar Auto w/ Cflex on this Forum. Can someone please point me to the link for that?

snoregirl, I also have trouble keeping my sinuses open. I use a Nasonex prescription, and I did sleep for 4 hours (reclining) tonight, with the Swift on. I had taped my mouth lightly, and the tape was loose when I woke up. Maybe I coughed in my sleep. ?? I guess a taping "reminder" doesn't work for me. I think I'll try the Ace bandage trick tonight ... haven't done that yet, but it seems like a good compromise. I always thought I was a nose breather, but I guess not.

DreamStalker, I have looked at the Hybrid, but I have TMJ, and it looks like the seal would press on my teeth. Unfortunately, that's not an option, as it causes more tooth and jaw pain, and worse headaches. I think I'm going to have to try to work more with a chin strap or taping.

Goofproof, thanks for your comments, too. BTW, I get a kick out of your "photo", and have learned a lot from your feedback to others.

Shedahl

[snoregirl]

You ask do I think you should change settings without consulting doctor. Depends on your relationship. Since they are going to read the results after a month they will know you changed them.

I would call the dr office and ask for the change so you don't get them ticked. They can give you a new prescription with new settings 7-15 or 8-15 from your current 5 - 15 would give you an idea if the 5 is your problem.

Tell the doctor that you are having trouble sleeping and many people have issues sleeping below 7 or 8.

Tell him/her if you need to "what good is a month trial/titration if I can't sleep and let the machine gather information." It can always be put back quickly and easily.

Once you get the script or phone ok, you can either take the machine in to where you got it or change it yourself. I recommend changing it yourself. You toggle through all the settings and check the DME who set it up.

If you think your doctor won't mind you being proactive then go ahead and change it yourself with out asking. But you are supposed to have a doctor's order. Only you can anticipate how your doctor will react and if you care.

Here are some condensed instructions from someone on this site

First, unplug the machine, then depress the two buttons below the display while reconnecting power. Keep the buttons depressed for about 5 seconds and you will have the machine in clinician's mode. Changing the settings is pretty straightforward. The HEAT and RAMP buttons let you change settings and the two buttons directly below the display allow you to navigate through the items which can be changed.


I will add that you can toggle through the settings already set on your machine to double check them without changing a thing.

I have another thought on a potential problem with sleeping

Make sure your machine is in AFLE (if you want cflex) (machine can be set in AFLE APAP CFLE CPAP (the pap's are no cflex, the FLE is with cflex, the a is for auto and c for CPAP-- pretty logical) and it will have a setting for either 1, 2, or 3 (3 being the most exhale relief). I use 1, many start with 2. Ramp should be 0 THIS IS MY OTHER THOUGHT. In auto mode there is no real ramp. I forgot exactly what it does (called split night) but it will do it after 2, 3 or 4 hours depending on what is set at. If that is on-- with a value other than ZERO that could be another reason you are waking up.
My DME set up a "Ramp" on my auto. I had to fix it. They had no clue. It is for some split night thing that someone else will have to explain the technical details of. The equiv of ramp on this auto is just hit the ramp button and it goes to your minimum setting (5 now). But no step up to a set pressure until the machine thinks you need it.

Check the RAMP setting before calling doctor on pressure. I still think 5 is too low but if the ramp is set wrongly then you might want to go there first.

My next comment is on the "30 days and then they will switch my machine"

I think you are referring to using an Auto then going to a normal CPAP.

Some people like the straight CPAP pressure, others like myself like options.

My advice here is look at your insurance, cost with and without, what it will cover etc. Lots of threads on this one. Also you can set the APAP as a CPAP (CFLE or CPAP option) to see how a normal CPAP would feel. Maybe you can do this while the doc is reading the month of data but before you go to "switch machines". Unless your machine is from the dr's office, it will be a different trip to the DME. "Gee I can't make it in to bring the APAP until Wed" (after a Monday dr appt) and you spend two nights on straight CPAP. If you are paying rental anyway, a machine is a machine. If you like the AUTO better by all means work on that, if you don't care do whatever works and costs you what you want.

You should get a NEW machine, and you shouldn't pay too much out of pocket. If insurance is paying they are paying for a new machine most likely and there are warrenty issued etc that you don't need to deal with on a used machine (unless you are getting a major price break). You can see total hours when you first plug it in. You can tell if the AUTO that they gave you is used and how used.

I am the opposite of you with the sinuses. I always thought I was a mouth breather but with all that air blowing up my nose with the swift I am fine 95% of the time with the nose. Do you have a humidifier and is it on? Not too high or the air feels heavy. Depends on where you live and your house air how high you want it. If you try anything to close your mouth, chin strap or ace bandage etc, resist the urge to clamp your teeth. I noticed a sore jaw recently and I realized I was clamping my teeth together. Stopped myself quickly once I figured that on out.

If you truly are a mouth breather, you might need to go to the full face mask.

Everyone's sinus issues are different. I used to be a nasal spray junkie (10 years) but it got to the point where it was doing more harm than good. I quit cold turkey a long time ago but then headed toward the oral antihist/decongestants. Since CPAP I am off the oral stuff too. I guess I am lucky, solved my sleep issues and nasal congestion in one step.

Keep working at it!!

[snoregirl]

I am not good with links but here is an old post that gives more detail


REMstar Auto w/C-Flex Setup

When in the Setup Menu, the humidifier ^ and ramp v buttons operate as up and down keys to change the settings, the left/right user buttons < > allow you to go to the previous/next question or setting, and the pressure start/stop button is used to exit the Setup Menu. Holding the humidifier or ramp buttons down will cause the values to change more quickly.

To enter the Therapy Setup Menu, hold the two top user buttons < > down while plugging in the power cord.
Continue holding the buttons down until the REMstar Auto w/C-Flex beeps twice.

Note: The word "setup" will appear on all of the screens indicating that you are in the Therapy Setup Menu.
(If you press the Pressure start/stop button, you will exit the Setup Menu.)

A. Compliance hours/nights: (recommend leaving alone, but CAN be cleared at this point)
Select next setting with >

B. Therapy mode: (CPAP/CFLE/APAP/AFLE) select with ^ or v
Select next setting with >

B1. If CPAP or CFLE select pressure setting: Select with ^ or v
Select next setting with >

B1a. C-Flex mode (if you chose CFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >

B2a. If APAP or AFLE, select minimum pressure setting: Select with ^ or v
Select next setting with >

B2b. If APAP or AFLE, select maximum pressure setting: Select with ^ or v
Select next setting with >

B3. C-Flex mode (if you chose AFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >

C: Ramp time setting: Select with ^ or v
(ramp time will be turned off with a setting of 0)
(if using APAP or AFLE mode, Ramp setting MUST be set to 0)
Select next setting with >

D. Ramp pressure setting: Select with ^ or v (use only in CPAP or CFLE mode)
Select next setting with >

E. Patient disconnect setting: 1 = on 0 = off Select with ^ or v
Select next setting with >

F. Buttons lights setting: 1 = on 0 = off Select with ^ or v

(Last setting. Use On/Off button to exit Setup)

[Shedahl]

Thank you SO MUCH for the advice, and taking the time to post those instructions for me. I'll let you know how it goes.

Shedahl