Struggling to hang in there !!!

[PurpleSwan3033]

I am new. I have been using my cpap machine regularly for about 34 days now. Everything was great the first four nights! I slept well and only got up only once (instead of 4-5 times like I did before cpap) and went right back to sleep. After that, I started waking up after about 90 minutes and finding it hard to get back to sleep. When I do get back to sleep, I find I can sleep about six more hours before getting up for the morning and that's a big improvement, too. I also started having trouble falling asleep at the beginning of my bedtime which is a problem I never, ever had before. I am doing at least 30 minutes a day of aerobic exercises and I have started drinking green tea to boost my metabolism and enhance my exercises. I am diabetic and find this routine is helping keep my blood sugars under control. I know I need to be patient and stick with this cpap therapy. I am feeling better and resting better. I have more energy during the daytime which is primarily responsible for me being about to maintain a regular exercise routine. I don't nap any more during the day like I use to for an hour or two. However, I still feel sleepy about 2 times a day but when I lie down I just cannot fall asleep. I lay there about 15-20 minutes on the machine and even though I cannot fall asleep I somehow think the machine is refreshing me. However, the anticipation of getting a "really, really good night sleep" is killing me! I keep expecting it to happen and I find myself looking forward all days long to my next night's sleep and being more and more disappointed the next morning, in spite of the improvements I am experiencing. What happened after those first 4 nights? Why is it so difficult trying to get back to that kind of sleep success again? My machine is set on 12. Do I need to set it higher? Any help/advice is very, very much appreciate. (I have been following this forum for about 3 weeks now and I find it and the people who are a part of it and their input to be very helpful and interesting. There is so very little help available elsewhere, and that includes my machine provider and my doctor. That's a shame!!!)

[cflame1]

Have you lost weight? Just wondering with what you say you're doing.

Plus have you tried picking up the numbers off your machine? Should give you an AHI at least.

[Slinky]

How comfortable to breathe is it when you first lay down to sleep?? Most likely the Ramp has been turned on and it may be that the Ramp starting pressure needs to be increased if you feel like you need just a little bit more air than you are getting at first and maybe more or less Ramp time too.

Was the Ramp feature explained to you? Do you know the Ramp starting pressure and how long Ramp is set for? Did they tell you how to adjust your Ramp starting pressure and Ramp time? Ramp time is set to the amount of time it usually takes you to get to sleep.

[DarkSideOfTheMoon]

Have you considered not resting during the day? Also, your Green Tea may have some caffeine in it so stop drinking that a few hours before bed. My need for sleep has gone down since starting CPAP. It was frustrating me to get less sleep but then I realized I didn't need it as much. I had the BEST sleeps when I first got my CPAP. Now I notice my mask half the night. The real miracle is that I'm not nearly as tired as I used to be. I can go all day and sometimes all week with no naps. You stated that you are seeing successes.

If you aren't having machine or mask issues, then stick to good sleep rituals. Go to bed and wake up at the same time everyday, have the room a bit on the cooler side, have it really dark, wind down an hour before bed, get up if you aren't falling asleep right away, etc. Exercise and better sleep may be working better than you think.

Good luck,
Cathy

[kteague]

It is discouraging to have unmet expectations - I was in that state for a very long time. As was mentioned, ramp was a problem for me as its settings were too low and too long making it hard for me to get each night off to a good start. Your mention of your nasal mask covering part of your mouth sounds to me like a poor fit. If your leaks are too high, the therapy is compromised and can result in apneas disturbing sleep. That can also happen if mouth breathing.

If you confirm your ramp is ok and your data shows acceptable leaks and you're not mouth breathing, consider other possible contributors. Any meds that cause sleep fragmentation, any mention of limb movements in your study, thyroid function normal?

It is still a bit early in your cpap experience, and your brain may not have fully accepted the mask and air as being "normal". This can cause awakenings too. Whatever is going on, it is good that you are making progress, and I hope your expectations are increasingly met.

Kathy

[PurpleSwan3033]

Yes, I have lost weight....about 15 pounds so far. As far as the ramp feature goes, I have stopped using it as of 2 nights ago. I assumed it was interfering with me getting to sleep. My breathing seems rapid when I first lay down to bed using the ramp feature. I remember thinking that if I could just slow down, then I am sure I will fall asleep. Maybe, that is when I do finally fall asleep....when my breathing slows down usually about an hour or so after I lay down. I do not know anything about the numbers, yet. I have the card installed on my Respironics RemStar Pro M-Series but I assumed all I was suppose to do with it was take it to my doctor when I go for my first assessment of my cpap use which is on November 17th, two-and-one half months after beginning cpap therapy. I have read quite a bit in this forum from people who are into reading the numbers. How to I get to that kind of understanding? I cannot afford the expensive software! (I actually resent the expensive cost of the software on top of the ridiculous cost of the cpap machine, mask and all the accessories I need.) (I just cannot believe the price gouging associated with this industry.) I cut off the green tea about 3 pm or 4 pm each day and switch to Chamomile tea which does not have caffeine but is reported to be good for diabetics, too. I would prefer not to nap at all but the urge for at least one nap, sometimes two, overwhelms me. My really big problem is the mask. I have tried 3, so far. They irritate the bridge of my nose so much it is skinned raw. I know now that I am mouth breathing because lately I have been waking up and catching myself doing so when I use the nasal mask. So now I am concentrating on just using the full face mask which is more uncomfortable but results in somewhat better sleep. Yes, I have noted that it still may be too soon in my cpap experience to accept the mask and to sleep continuously. It is just that those first 4 wonderful nights were so impressive and all the subsequent nights make me feel like I am on some kind of withdrawal. In any event, I will continue on and remain compliant. It is still sooo much better than sleep-before-cpap and I am confident that it must get much better than this, too. Thank you all for your quick and thoughtful responses. I will continue to monitor the forum for additional input. Good luck to all of you and God bless.

[cflame1]

Check these instructions out purpleswan... it might be able to get you some information. Just remember that before you change anything, write it all down first and only change 1 thing at a time (so that you know what you did). One of the settings on your machine (follow the directions for the Plus) should be to show some statistics on the LCD. The clinical manual is at the bottom of the screen (scroll all the way down).

http://www.apneaboard.com/CPAP%20Adjustment.htm

[fishhead]

However, the anticipation of getting a "really, really good night sleep" is killing me! I keep expecting it to happen and I find myself looking forward all days long to my next night's sleep and being more and more disappointed the next morning, in spite of the improvements I am experiencing. What happened after those first 4 nights? Why is it so difficult trying to get back to that kind of sleep success again?

how long do you think you think you've had sleep apnea? it may be that your body is just not accustomed to the quality of sleep you are able to achieve in an hour two and decides to wake up. in other words, once you have reached the level of rest you used to acheive in a full 8 hours, it just doesn't know that it can sleep longer, so it wakes you up thinking it's time to start the day.

to me, it sounds like the therapy is really working. and now your finding out what little effective sleep you used to get. stay with it, you are slowly retraining your brain/mind/body that it can get more rest.

[PurpleSwan3033]

Thanks a lot for the instructions. I will check them out today. I think I have had sleep apnea for 17-18 years or so. I will give my body more time to adapt to the therapy as suggested. Also, I, too, think I have a mask problem and I am arranging to go in for a proper fitting. Thanks for all the input. Take care and God bless.

[Slinky]

Do you have a lung or breathing problem and shortness of breath or rapid breathing during the day?? You can try 'pursed lip breathing' recommended for those w/COPD.

Breathe IN thru your nose, breathe OUT thru your mouth w/your lips pursed like you are trying to whistle. This creates some resistance to exhaling and slows down your breathing and your heart rate quite quickly - and comfortably.

[PurpleSwan3033]

Just getting back with an update to say that I finally got my DME and my doctor's attention, after 3 long, long months of suffering and complaining, and they exchanged my cpap machine for an apap. That was 3 nights ago and I have been sleep much, much better. I hope I am not being premature. I hope it continues. What really, really confuses me is how uncaring and unsupportive these other players seem to be and how long they let you go on suffering before they do anything about it. They promise and say things when you complain and then you have to get back to them several days later to move your problem from one person's desk to another. Three months of suffering and complaining just does not seem to be something a true professional should be comfortable with. I do not expect a Doc Adams (as in Gunsmoke) but these people are suppose to know the frustrations and pains of sleep deprivation. They practically ignore anything I have to say, yet, they are not professional enough to resolve my problem on their own. And, no one checks back with you, when you complain, to see how you are doing. In the meantime, I find it difficult to bail out of my situation and change to another DME because my doctor stonewalls me because they prefer the DME they are using, in spite of my complaints. And, I find it difficult to change doctors because I dread starting all over again with someone else because it would mean I probably will be stuck in the suffering mode until the next so-called professional gets up to speed on what's going on with me. I see why so may people give up on cpap therapy. It's like dealing with used car salespeople, you keep getting screwed. This whole cpap therapy thing seems to be set up wrong. And, I am convinced that there is a lot of recycling of used equipment going on while they are charging new equipment prices on equipment that is already overpriced to begin with. If so many peple are having problems, why don't they call us back in and do more sleep studies to observe problems more closely and try and pinpoint what is going on. It can't be any more costly than changing out equipment over-and-over again on a hit-or-miss basis and just making tons of money. What's the big secret about refusing to give the patients more control over this equipment if we abandon the therapy in frustration (or have to take control, anyway)? And, why do people have to discuss in these forums what we should be able to discuss with our doctors or with the DME's, the so-called respitory therapists, etc. Not only are they the ones who get paid for it but they are the ones who are suppose to be the "professionals". But who am I and, what am I talking about, anyway. Woe is me!

[Slinky]

Try this:

Send a WRITTEN request via Certified Mail, Return Receipt Requested for a copy of

1] a copy of the full scored data report w/condensed graphs from each in-lab sleep evaluation and titration study you have had
2] a copy of the sleep doctor's dictated results from each in-lab sleep evaluation and titration study you have had
3] a copy of each equipment order (prescription) and pressure change this sleep doctor has ordered

They are part of your medical records and as such you have a LEGAL RIGHT to these copies under HIPAA.

Call your insurance company and ask them what local DME providers they are contracted with. Hopefully you will have the option of more than just this one.

Check w/your local hospital(s) and sleep labs about any local apnea support group meetings. If there are any go to them. Ask people there what sleep lab and sleep doctor they use and if they are satisfied w/them.

Make an appointment w/another sleep doctor and explain your predicament. Don't be openly critical of your current sleep doctor. Just make it clear that you need help faster than you've been getting it and that you are considering changing both DME provider and sleep doctor to one able to be more responsive in a more timely manner.

Good luck!

[MoneyGal]

PurpleSwan: I am sure many people here have experienced what you have in terms of seemingly uncaring, even incompetent health care providers. I am dealing with another health issue as well as OSA (again, like many people here) and I am always amazing at the amount of effort I need to expend to get everyone on my health care teams working together (and I'm amazed at how many people need to be on board: primary physician, physical therapist, surgical team, the list goes on).

The way I have been able to think about this productively for myself is that I am pulling health and healing towards me. Does that make sense? If I took the attitude that somehow health was going to "find" me, or that other people need to know what works for me and they need to tell me, I'd still be undiagnosed and suffering. Instead, I think about myself as the one in the centre, and I am pulling the strings to get what I need.

Now that I've typed all that out I'm not sure it's of any value. However, it is a mental image I draw on and that I like to think gives me power over my health and healthcare. Best of luck to you on your journey!

[pmcall57]

The way I have been able to think about this productively for myself is that I am pulling health and healing towards me. Does that make sense? If I took the attitude that somehow health was going to "find" me, or that other people need to know what works for me and they need to tell me, I'd still be undiagnosed and suffering. Instead, I think about myself as the one in the centre, and I am pulling the strings to get what I need.

Now that I've typed all that out I'm not sure it's of any value. However, it is a mental image I draw on and that I like to think gives me power over my health and healthcare. Best of luck to you on your journey!

It's of value to me, so thank you, MoneyGal! I'm lucky to have a primary care doc who helps me pull the strings (I'm in an HMO with well-coordinated care), but ultimately it still is up to me to make sure the strings get pulled to draw the right stuff toward me. Nice image! Pam