New to this Stuff

[lindam0521]

diagnosed with mild to moderate OSA one month ago/second hospital sleep study with mask two weeks ago-picked up my CPAP machine w/nasal mask later that week,

started off with all sorts of problems: leaky mask, improper head gear set up, couple of nights during the past 10 days of use got better than usual sleep/not great.

Am mouth breather/ allergies/ sinus issues, didn't want full face mask, tried it at office/ made me claustrophic. thought i had it right saturday night w/chin strap, set up exactly same last night/ woke up about 2 1/2 hours after i went to bed, not able to fall back asleep for over an hour. when i got up couple of hours later whole head and body seemed dried out and raw; horrible day.

more i read, seems as if the mask is leaking even though chin strap seems to keep mouth closed/able to do it during the hospital study. normally stomach, head-in-the-pillow sleeper, sleeping on side/ bought 'memory cloud' type pillow to keep head and tube better in place. am a restless sleeper, probably moving around too much & mask is slipping/leaking.

follow up w/ doc thursday/beginning to think i need the full face mask for better seal/ no leakage. anybody with similar experiences?

always had problems sleeping through night, constantly awakening, sometimes for long periods of time. at this point in my life i feel so awful in the morning it's hard to function so i broke down and was tested. doc said that i stopped breathing much more frequently during REM, "Dream" sleep but also did during non-REM.

i know it can take some people more time to adjust than others but i'm so frustrated and not feeling better only worse...

[Janknitz]

Phew! Please try to break your posts up into smaller paragraphs--that's a lot to take in all at once! And it will help us help you if you let us know what machine you have.

As far as mouth breathing, you need to help your sinuses. Try this:
a. Use a saline nasal rinse (spray or neti pot) once or twice daily.
b. Ask your doctor about a steroid nasal spray or oral allergy pill to help clear out your sinuses.
c. You may have to experiment with different chin straps or even taping your lips shut--even with your jaw closed you could still be leaking air from your lips.

If you can't keep things sealed up, you might want to look at hybrid masks which combine nasal pillow masks with a seal over the mouth.

Once you get the leaks under control, you should start to sleep better. The frequent wakenings you have are probably related to the apnea and should become less frequent when the treatment is starting to be effective for you.

Good luck--the adjustment period is tough, but sounds like you're doing very well so far.

[Emilia]

Hi Linda.... welcome to the forum. If you would take a minute to go to the User Control Panel (top left) and then to Profile, choose Edit Equipment and then choose each item from the pull down menus. Please choose to show these in TEXT not icons. This will put your equipment at the bottom of each post you write automatically and helps those of us with the same equipment to give you advice.

Thanks!! Good luck.....

[lindam0521]

thanks for the advice Janknitz--i'm new to posting on boards...

Emilia, i'll look at the control panel-again, i haven't done this much so i welcome your comments...

[Emilia]

Well, you are making progress.... now go back to the Edit Equipment and choose to show it in TEXT not pictures!! A lot of machines look alike but are entirely different in what they can do so have the make/model in Text helps us to know what you have immediately.

[Muse-Inc]

Hiya! Welcome, ya found a great place for info, support, mentoring, and venting.

30 yrs vetern of nasal (& contact) allergies, chronic sinusitis, vasomotor rhinitis, and gustatory rhinitis -- my biggest challeges to CPAP therapy. Things I've learned:

• Saline sprays & nasal irrigation work. I do this about 30 mins before bedtime to allow for drainage.
• The RespCare Hybrid Univeral mask has the comfort of pillows and the security of never losing therapy air (covers mouth) with nothing covering nose or touching forehead. It's great in handling the next bulleted item.
• An APAP with its varying pressure handles my unpredictable congestion & decongestion that cause my airways to narrow. My 6-month average 95thcentile is 10.5 with my APAP range currently set to 9.6-15. My nightly pressure has varied from 6.9 (last winter less congestion with initial pressure at 6) to 14.4 all a reflection of my congestion issues. I now track my wakeup congestion to watch for trends needing possible changes in meds.
• Nasal steroids help during allergy season and are pretty useless for me otherwise.
• Astrepro worked for several months and now congests me...go figure.
• Generic Claritin nightly helps.
• Humidification is very important for me. The colder or drier the room air, the more moisture I need. I also drink a lot of water during the day to prevent dehydration. Hot steaming tea really does help decongest.
• The supplement Quercetin+Vitamin C helps me.
• Afrin is magic with a hideous bite...cardiac side effects and rebound congestion, but boy when I need it I get 5 days of clear breathing...heaven!

PS I have severe claustrophobia and fear of suffocation...can't even look at tradtional FFMs without shudders.

[robysue]

follow up w/ doc thursday/beginning to think i need the full face mask for better seal/ no leakage. anybody with similar experiences?

Make sure you talk to your sleep doctor about all of your medical symptoms instead of the mask issues, which are really equipment issues instead of medical issue. You might want to take a written list of questions with you. In particular you say you "always had problems sleeping through night, constantly awakening, sometimes for long periods of time." Be sure to talk to the doctor about this issue. It may (or may not) be related to your apnea. But the "wake up at night and can't get back to sleep" type of insomnia is undoubtably making it even harder for you to try to adjust to the CPAP therapy. You should ask your doctor for non-drug suggestions on what you should do if you wake up and simply cannot get back to sleep in a timely fashion. It's doing you no real good lying in bed worrying about not being able to sleep.

The mask issues are best be resolved by going directly to the DME and talking to an RT. Check out what the DME's policy on first masks is. The good ones will allow you to swap masks at least once or twice if you're not feeling like the current mask is working for you. However the trial period is often limited to 30 days. Since you have been using the current mask for a couple of weeks, you need to find out what the DME's policy on exchange masks for brand new CPAP patients.

Finally your picture link seems to indicate that you've got a REMstar System One Auto. Is that correct? If so, you've got a full data machine, which is good. Do you know how to check to see what your leak rate is? Do you know how to check each morning to see what your AHI was the previous night? Looking at the data on your own may help you better figure out if leaks are the real problem with the current mask and if your AHI is now nice and low, you can allow yourself a little celebration for *knowing* the therapy is actually doing you some good even though you're still feeling really rotten.

[linda0521]

follow up w/ doc thursday/beginning to think i need the full face mask for better seal/ no leakage. anybody with similar experiences?

Make sure you talk to your sleep doctor about all of your medical symptoms instead of the mask issues, which are really equipment issues instead of medical issue. You might want to take a written list of questions with you. In particular you say you "always had problems sleeping through night, constantly awakening, sometimes for long periods of time." Be sure to talk to the doctor about this issue. It may (or may not) be related to your apnea. But the "wake up at night and can't get back to sleep" type of insomnia is undoubtably making it even harder for you to try to adjust to the CPAP therapy. You should ask your doctor for non-drug suggestions on what you should do if you wake up and simply cannot get back to sleep in a timely fashion. It's doing you no real good lying in bed worrying about not being able to sleep.

The mask issues are best be resolved by going directly to the DME and talking to an RT. Check out what the DME's policy on first masks is. The good ones will allow you to swap masks at least once or twice if you're not feeling like the current mask is working for you. However the trial period is often limited to 30 days. Since you have been using the current mask for a couple of weeks, you need to find out what the DME's policy on exchange masks for brand new CPAP patients.

Finally your picture link seems to indicate that you've got a REMstar System One Auto. Is that correct? If so, you've got a full data machine, which is good. Do you know how to check to see what your leak rate is? Do you know how to check each morning to see what your AHI was the previous night? Looking at the data on your own may help you better figure out if leaks are the real problem with the current mask and if your AHI is now nice and low, you can allow yourself a little celebration for *knowing* the therapy is actually doing you some good even though you're still feeling really rotten.

Thanks for the good advice. I have begun to compile a list of questions for the doctor.

i was told i have a thirty day window to swap masks. i've had this one almost two weeks

i have no idea how to access any data from the machine. Are some of these values read directly on the LED screen?

[robysue]

i have no idea how to access any data from the machine. Are some of these values read directly on the LED screen?

Unfortunately, I can't help with this question because I wound up going with the Resmed S9.

But if your machine really is a PR REMstar System One Auto, someone with that machine should be able to help you with how to at least access the overnight AHI and (maybe) leak info from the machine's LCD screen.

Look for a poster with your equipment listed and PM them with this question. That might be the fastest way to get an answer.

[lindam0521]

saw doc on thursday, decided to go with FFM to eliminate any mouth breathing issues. Mirage Quattro was quite comfortable, though FFM bothered me when i first tried one --maybe wearing a mask for a couple of weeks made the difference.

Used it last night, better sleep, still awakening but think i need a room fan running, not just a small desktop one, since i'm always hot and that might be what's waking me up. doc said that the awakenings may go away with time.

also gave me script for nasal spray, to use it every day so it would work to relieve my ongoing congestion due to allergies. still using saline nasal spray at bedtime it seems to help too. and zyrtec once daily.

though second study with mask showed flows of 7-9 resolving apenas, they felt 7 was optimal but asked me if i felt i needed more pressure. think i do so it's now set on 8.

We'll see how it works tonight--

[robysue]

Any luck yet on learning how to access the efficacy data from the machine yet?

[lindam0521]

Any luck yet on learning how to access the efficacy data from the machine yet?

finally found software for my machine that works on my laptop....i took a while though..

downloaded successfully, trying to use it now and am confused....the unit i have is data capable and everything i have read on it states it should give full data reports include AHI, Leakage, etc. but when i loaded the SD card i can only find compliance tracking data...hours used, etc. I can't find how to access any other data.

am i doing something wrong or is it possible that my unit is set up to only track hours used??

[Janknitz]

finally found software for my machine that works on my laptop....i took a while though..

downloaded successfully, trying to use it now and am confused....the unit i have is data capable and everything i have read on it states it should give full data reports include AHI, Leakage, etc. but when i loaded the SD card i can only find compliance tracking data...hours used, etc. I can't find how to access any other data.

am i doing something wrong or is it possible that my unit is set up to only track hours used??

Hmmm, you need to check your model. I'm suspecting what you really have is a System One Remstar Plus CPAP with C-Flex. Look right above the LED screen. Does it say "Remstar Plus C-Flex"? If so, my condolences. Your machine has compliance data only.

The

Remstar Pro C-Flex +

will say exactly that above the LED screen. That does have data. If you truly do have this one, the data may not be enabled. You will have to go into the clinician's menu and enable it. I didn't even know the efficacy data could be disabled, though, so I'm suspicious that you probably have a Plus, not a Pro.

[lindam0521]

finally found software for my machine that works on my laptop....i took a while though..

downloaded successfully, trying to use it now and am confused....the unit i have is data capable and everything i have read on it states it should give full data reports include AHI, Leakage, etc. but when i loaded the SD card i can only find compliance tracking data...hours used, etc. I can't find how to access any other data.

am i doing something wrong or is it possible that my unit is set up to only track hours used??

Hmmm, you need to check your model. I'm suspecting what you really have is a System One Remstar Plus CPAP with C-Flex. Look right above the LED screen. Does it say "Remstar Plus C-Flex"? If so, my condolences. Your machine has compliance data only.

The

Remstar Pro C-Flex +

will say exactly that above the LED screen. That does have data. If you truly do have this one, the data may not be enabled. You will have to go into the clinician's menu and enable it. I didn't even know the efficacy data could be disabled, though, so I'm suspicious that you probably have a Plus, not a Pro.

unfortunately, you are correct--confirmed that it is a Plus, not a Pro. am really disappointed, after all the time getting the software and setting it up. really figured it had the efficacy data, just didn't read out on the LCD screen like the compliance data does. That's probably why the respiratory assistant quoted the compliance numbers to me at the last visit, figured since my regular doctor wasn't there they didn't read the card.

i would think that the doctors would want to read efficacy data at my visits, guess all they are going by is compliance hours.

I did read, however, that the Pro efficacy data can be disabled by the home care provider, though....that's what I thought i was running into when I was reading the on line manual, not realizing it was not the model I have.

Good news, however, is that I have had two good nights of sleep. finding that staying up later than usual to get really tired helps, chiling the room by leaving a window open during the day/evening hours and shutting it before I go to bed helps, but now i have to work on falling asleep more easily without the prescription sedative i've used for anxiety for some time.

THe meds really never put me to sleep but tended to relax me--the night before last i took the full dosage later than usual and woke up still tired, even though I slept through the night. Last night i took it a few hours earlier and went to bed an hour or so earlier, and slept well again but not fully awake or rested in the morning. This weekend i'm going to try to take 1/2 dosage even earlier and see how that goes. I hope to wean myself off completely with time.