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11-30-2013, 10:33 AM
Thanks for the suggestions. I didn't seem to have the bubbly moisture last night. I tweaked the humidity setting and turned off the ramp. Last night was like a different night as far as comfort goes with the breathing. Didn't feel at all antsy and breathing was quite comfortable. I managed to get 5.5 hours on the machine comfortably. I didn't actually sleep much during those hours though. Wide awake. I think part of it is hesitancy in moving around and finding comfortable positions. With breathing so well I didn't want anything to change it or get leaks. I waited it out a long while hoping to nod off. Then finally took it off. As soon as I took it off I went out hard and slept 2 hour. When I woke I put it back on for several more hours. If I slept at all it was very light. I experimented with getting in comfortable positions and showing myself I could move without jinxing it. I took it off the last couple hours this morning and again went to sleep hard. I think I have to work on not over thinking it now. I am encouraged with the ease of breathing and thankful for that. Hubby commented I have made a lot of progress in a short time. The leak report today was 2L/min, green smiley face, AHI 0. The zero is probably because I didn't get to sleep in the phase that would cause the AHI. That is just a guess.
12-03-2013, 11:53 AM
Just an update. It only took me two nights to 'get used to' this new way of breathing with the apparatus on my head and pillows in my nose and the different feeling with the pressure and sometimes feeling smothered. Not much sleep those nights. Thankfully it was a long holiday weekend for me and I didn't have to worry about getting up for work.
I did as the therapist suggested. Wear it as long as I can then take it off, get some sleep without it and try again the next night and try to improve time. I, however, took it off for a few hours of not sleeping with it on, went to sleep and when I woke up again put it back on. My husband had encouraged me to put it back on when I woke up (well he actually woke me up the first night and made me put it back on) ... his theory was maybe by then being half awake and groggy I would tolerate it better and go back to sleep with it on. Admittedly I was a bit annoyed with him that night and I would rather just wait til the next night and try again. But I really didn't want to end up bailing out of this prematurely and was already entertaining thoughts that it wasn't much fun and I am only a moderate diagnosis any way ... yada yada yada. So ... I put it back on.
After a couple nights of misery, I found the time to study the machine and settings. Being a holiday weekend with a lot of family around, it was hard to find the time for a couple nights. Having tuned in to some suggestions and experiences on this forum, I tweaked the humidity setting and turned off the ramp. I had tried backing off the time on the ramp from 45 min down to 5 and still didn't feel like I was getting enough air to make me feel comfortable when I put the mask on. That 45 min and even 5 min felt like hours. So I turned off the ramp. That night when I put it on, it actually felt a lot more comfortable ... actually quite tolerable and plenty of air. I had remembered during my tritation that I complained when I put the masks on that I thought CPAPS were supposed to give me air and it felt really constricted and not enough. I just wanted to keep deep breathing to take more in. She said they start out at low pressure of 4 and work it up in the study so she turned up the pressure on the machine to start me out at. It helped. I remembered that and with what I had read on this forum about being able to turn off the ramp, I decided to do that. It seemed to make a big difference for me.
Now I am able to put it on each night and feel comfortable and not fighting it. But I lay in bed wide awake and just can't seem to get to sleep. I think it is a combination of uncomfortable with moving around with it on and finding the sleep positions I am accustomed to. I am still following the protocol of putting it on and if I haven't fallen asleep after a couple hours, I remove it. When I wake up later, I put it back on while I am half awake and have been able to fall asleep with it on. I guess my husband's idea had some merit
I had a discussion with the sleep lab today. They are going to provide me with a prescription sleep aid for a short time to hopefully get me over this bump with insomnia. I don't want to have to be on medications for this and hope it is very temporary.
The respiratory therapist had told me they had the ability to remotely make adjustments on the machine if needed and can see all my data every night with a wireless pack on the back of my machine. I received a letter from the DME thanking me for choosing them and letting me know they would call me in a week to see how I am doing with it. I just received the call while typing this update. I knew there was a compliance part to this for insurance purposes (by reading this forum) but no one told me what the regulations were when I received my machine. During my phone call I was told I have to be 70% compliant (4+ hrs/night). I kind of already knew that by reading this forum too and was targeting 4 hours. I thought the nights I went over would make up for the nights slightly under 4 hours. Apparently not! DME has 5 nights of data and I have had one night with 3 hrs. 59 min. and another night 3 hrs. 49 min. The other 3 nights are above 4 hours. He said I am close to the 70% but the two nights under are red flags and for insurance it has to be minimum 4 hrs each night for a 30 day period. The DME will follow my progress for 90 days and will turn in a 30 day period to the insurance when I reach 70% compliance. He said the rest of my data as far as therapy results looks good so far.
12-03-2013, 04:40 PM
You can look at your data in ResScan and/or SleepyHead. I would suggest that you do that so you can see with your own eyes what is happening when you are asleep.
Also, there are some natural over the counter sleep aids that work well but there again, not knowing if you are on other medications, your doctor would know what is best for you hopefully.
It is different for each of us and maybe a sleep aid will help you out. Just stick it out because it is better than the alternative.
12-03-2013, 07:02 PM
Thanks me50. I definitely intend to use the sleepyhead software. I am a technical person and that just seems natural to me to get involved. I haven't gotten around to getting a card reader yet and downloading the software. I am already curious and wanting more detail than just AHI, hours on the machine and green smiley face. I found reading the full report of my first sleep study fascinating.
I have been trying the natural remedies. It has only been 5 days but they don't seem to do much. I ran into the sleep lab coordinator last evening whom I know personally. She offered to inquire with the doctor today. He wrote a prescription for a very mild sleep aid. The pharmacist said many use it long term with no side effects. I don't want to be on anything so hopefully this will do the trick to get me by the problem short term. I take post cancer meds right now that I can't wait to get off. Just don't like taking drugs if I can avoid it.
In my first sleep study the doctor indicated I might have a possible insomnia problem and discussed in the report different things we could try. I think I have spent too many years worrying about the snoring and disturbance to my family. I learned how to keep myself awake and sleep lightly. Particularly when we travel and in hotel rooms where they can't escape. I need to reverse that now.
12-03-2013, 08:48 PM
(12-03-2013, 07:02 PM)ImaSurvivor Wrote: Thanks me50. I definitely intend to use the sleepyhead software. I am a technical person and that just seems natural to me to get involved. I haven't gotten around to getting a card reader yet and downloading the software. I am already curious and wanting more detail than just AHI, hours on the machine and green smiley face. I found reading the full report of my first sleep study fascinating.
somnapure is an OTC natural sleep aid that many have raved about. if you are interested, of course, check with your doctor(s) to see how it will work with your other meds.
Also, if you have a laptop/PC with an SD slot, you can use that to read your data. You probably already know that though.
welcome to the forum
12-04-2013, 02:23 PM
Thank You. I will check out somnapure. I have tried melatonin and not doing much but I think that takes a while to get enough in your system. I have taken it in the past and never thought it did much. I always hesitate on taking any OTC out of the ordinary (pain relievers, cold meds, etc.) without checking with my battery of doctors first. Same with anything herbal.
I have a very old PC at home that my entire family dreads turning on. I only use it to sync my devices every now and then. It doesn't have a card reader and would be way too slow. My husband has a fairly new laptop. I asked him if it had one and he wasn't sure. They aren't too difficult to get at WalMart. I intend to download the software on hubby's laptop rather than battle with our slow desktop in the short term. I have an iPad at home that I love but of course it does have limitations on things like this. I have two very good computers at work. But I don't want to bring sleepyhead onto them. I have been considering getting a laptop for myself at home as I am considering retiring in another year. Have kind of wondered if one might show up under the Christmas Tree. But probably not. I may move it along quicker with getting one so I don't have to borrow my husband's too much.
12-05-2013, 03:20 PM
(11-29-2013, 12:13 AM)eviltim Wrote: I have found CPAP has accelerated my weight loss. (Actually, I just couldn't get under 190 without it no matter what). I don't know if it is hormonal, or just because being well rested has me making better choices about what to eat, but I'm not complaining.
Best news I've heard all day! I'm not thrilled about the prospect of life-long CPAP use, but I'm not afraid to START it and give it the effort I can tell from this forum and others is going to be needed to adjust to this lifestyle. I'd rather be alive and healthy than prematurely dead.
12-06-2013, 02:34 AM
I hear you on the insomnia. The good news is, once you get used to it, the CPAP is a sleep trigger in and of itself. Kind of like putting a hood over a bird's cage. CPAP's on, time to knock out. I've been falling asleep much quicker now that I'm used to it.
12-06-2013, 03:56 AM
One thing I might suggest. Where is your machine in relation to your head? I find that I get better results if my machine is just below the level of my head when i sleep. If I place the machine a larger distance from my head (On top of headboard or near floor. Mainly while travelling.) I get the feeling that I am smothering with my mask on. I made a table that is the same height as the middle on my mattress (vertically) and put my machine on that. I also use a rod to hold my hose (got it on eBay for about 10.00). I also use a Breathe-Right strip on my nose.
Thanks for the suggestion. My machine is on a night stand about level with my head. The Therapist had told me it should be level with my head although I have seen on here that others say to put it slightly lower. Not sure if I have the ability to do that with our current space, furniture and set up. I do have posts on the head of the bed and I am able to loop the hose up over the post then reaching downward to me.
I am looking forward to that sleep trigger. I am hearing spouses also like the CPAPS not only to eliminate snoring but they become accustomed to and like the soft hum. I had a friend tell me yesterday that her husband was called out to work at night and she missed not hearing the machine running.
I'm hoping for the silver lining of losing weight. I go to the gym regularly and careful what I eat so I have the good habits. I think with the post cancer med I am on (known to cause weight gain and difficulty losing it) and also Apnea (known for the same weight problems) maybe I have been suffering a double whammy.
The last two nights I have knocked off 8 hours on the machine and gotten to sleep after lights out fairly quick. I have put the machine on the last couple of nights an hour before I am really ready to go to sleep, while watching TV, so I can be sure to get my compliance in. It was close on some nights last week with exactly 4 hours, one night was 3 hrs 59 min and another night was 3 hrs. 49 min. A few others were 5-6 hours. I was removing the mask and turning off machine after two hours of insomnia and reaching the midnight hour because I would start fretting about the early morning alarm for work. I put the machine back on when I woke in the night and was lucky it was usually by 4 am which got me another couple hours before I had to get up. But was afraid if I didn't happen to wake up at 4 or earlier to get enough time on it, it would present problems with compliance. Thought about setting an alarm to wake me up to put it back on, but if I did happen to fall asleep without taking it off, I didn't want an alarm to wake me up. Maybe that is behind me now. Feeling encouraged with the last two nights and getting to sleep within a half hour of lights out.
The mild sleeping aid might be helping or I am adapting. Either way it is a relief to know I seem to have turned a corner.
Not feeling terribly rested during the day yet but I understand with a deficit of rest, it takes time to get there. I can and have always been able to function pretty well driving and working. I was never 'in a fog' or falling asleep when I shouldn't. Just not a ton of energy. Making myself go to the gym every day after work is a mental battle because I don't feel like it, don't have the energy and just don't want to go. Once I go and get done I am happy and feel good but the mental battle is tiring too.