New here, need advice

#2

Rococco. While I too have severe, and complex, sleep apnea I cannot fathom managing those other variables you mentioned. In my case, my use of a sleeping aid was the result of a stroke. Thankfully the professionals helping me feel the stroke was caused by my apnea. As a result I am 100% complaint with the use of my machine as I do not wish to relive that experience.

I offer this background for two reasons. The first being severe apnea such as yours could easily be a precursor to a stroke, IMO, and having solid professional advice helping you manage sleep, pain meds, and hay fever is a must, again IMO. Please do not give up rather take it as a challenge to build a way forward that will give you that level of sleep you rightfully expect and desire. Good luck! Dave

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#3

Is the mask not comfortable after 3 hours wear? I found my face to be sore & marked in the morning so I found a sheet of 1/2 inch thick foam rubber, traced the outline of the mask and cut a piece an inch wider with a small central hole. I find less discomfort and I am told there is less air leakage- which would wake up my wife.
Hope this helps,

                                  Chuck
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#4

I had 149 initially. I have a full mask. I am down to 4 to 14 after a year and a half. I still don’t find the mask comfortable. It took me about 6 months of trying different pressures, humidity and temp settings to get to where I could live with the machine. I find it helpful to take the mask off once during the night and re ramp. I use 5 minutes ramp time and I check for mask fit before trying to sleep. I have made a great deal of progress and I now do not sleep during the day. But, yes I still fight to use it, because it has made things so much better. I wish I had some advice for you, but, I can only say work with your Dr. try different mask, different settings, but, if possible keep trying.

#5

Hello Rococco.
LIke DavidP has stated I also “cannot fathom managing those other variables you mentioned”.
like you I have had sleep problems all my life, and only got told I had apnea 2 years ago, (I am now 62)
When we start using CPAP it can turn your world a little upside down, its just the way it is, your body is just adjusting to what is happening, your doctor may have no real idea as to what pressure will suit you on your machine, as its all a case of trial and error on there half for the most, so I can only suggest from what you say, is to never give up, just stick with it, your doing right by using your machine during the day, as it will help you to adjust to the mask, you seem to be frustrated and maybe a little frightened with this new experience, and that is just normal when first on Cpap, it is not easy as we all know, but just try and relax and don not let it get the better of you as it seems to be doing, firstly got back to your doctor and tell him that the pressure that he set your machine may be to high, with you having such a high rate of stops per hour that pressure will be high, so now that you getting used to the machine it may need lowering , it could be just that what needs looking at for now, yes you will also have mask problems (like leaks) that is also due to a high pressure and maybe you having the straps to tight.
So my friend try and relax and not let this get your anxiety levels up, you will get there, and yes it does take a while to adjust to your machine (usually 6 months) its just something we all have to go through, but if you learn how to manage each problem as it comes then it will be a lot easier, you have done the right thing by joining this site to seek advise, so hope it all helps you, now good luck, and take care.

#6

Hello Rococco, I too had an initial reading of 106. I use now after a lot of trial and error Respironics “Dreamwear” - it is a nasal mask with a nose cushion. (https://www.usa.philips.com/). It works the best for me - (I didn’t like full face masks). I have lots of side-effects like loss of taste, smell, lots of burping nose stuffed up all day, etc. but compared to having a stroke (as DavidP remarked) I’ll live with these annoyances. For me finding the right pressure has been key to getting enough sleep. Ask your physician to try to find the lowest pressure that will do the job for you - I am now on 10. Because I am a senior I also can work with Lincare a respiratory therapy home health agency and they have been helpful. I don’t know if younger persons get the help and advice of a home health agency, I hope so. It is so important for your health that you get the machine, pressure and “mask” adjustments you need. If you feel your physician is not responding to your distress, hopefully you can switch to one who will hard to make you as comfortable as possible. Keep advocating for your health. I wish you the best.

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#7

Rocco we are quite a bit a like. I also have back problems. I have had 8 surgeries and also have a pain pump with dilaudid. That doesn’t work so well.
I also have a high number of ahi. So my machine is set very high.
They are uncomfortable and very hard to get used to. But little by little I’m acclimating. It just takes time and patience. Keep trying

#8

I have multiple issues including sinusitis and rhinitis. I used to take off the mask in my sleep in the beginning. I tried waring the mask while awake watching TV and reading until I got so used to it but listening to music I began to doze with it on. It took a little while but not a year. Once I got passed that I began to see how much better I began to feel over time and that sealed the deal for me.

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#9

Hey Rococco, ditto can’t believe you’re managing the back and hayfever and now sleep apnea. I feel for you man. I have been on the machine 10 months and had a lot of trouble getting used to the physical mask and machine, but mostly with wrapping my head around the fact that I probably would be using this machine for the rest of my natural life. Freaked me out completely. My central sleep apnea had given me atrial fibrilation, and my heartbeat shot up to 180 resting. After a month on blood thinners, and a shock from the electric paddles, I started using the machine. Three days later I was breathing freely due to the nightly therapy from the machine. I hate the machine. It is not fun sleeping in a mask and I will probably never get used to it, but I use it every night religiously because it solved my afib, I can breathe clearly again, and I’m getting good continuous sleep, sometimes up to 7 hours in one stretch. Stick in there and make it work for you!

#10

Thank you Dave, for sharing your store. I was not aware apnoea could be a precursor for a stroke. Though my doctor did say that when I will be able to sleep better, that will also reduce my high blood pressure (which I know can cause a stroke or heart attack).

#11

Bad sleeper, you are right I am a bit frustrated at the moment. I keep trying, but fmfinding the mask on the floor every morning is starting to annoy me, because i don’t see me making any progress.
The air pressure is high, but the doctor told me he can’t reduce it. Does having a humidifier make things better?

#12

J.Howie, I too had 4 back surgeries, before getting the pain pump. I have a question. I’ve not heard of your medication which you have in the pump. Is it a kind of morphine or is it a muscle relaxant? You too good luck and take care

#13

You are most welcome. To me, getting a safe ( less than five events per hour) night’s sleep is a very worthy…and attainable…goal. Best wishes, Dave

#14

Hi tadpole - I fight with the machine every night as well. It usually takes me 2 - 3 sessions per night to try to get to the 7 hours they seem to want everyone at because I cannot keep it on that long straight for a lot of reasons - long hair, sweating at times, stuffed up nose and can’t breathe, etc. So, yeah, I guess many of us fight it to get it to work. BUT it is working, just probably more slowly than they initially led me to believe it would. Take care

#15

I do the same thing afronative - I put the mask on for 30 - 60 minutes while I read cartoon books, like Pearls Before Swine, and that allows me to adjust and fade a lot better.

#16

Hi Rococco - I’m sorry that you are dealing with so much. It IS hard to get it to work, but both strokes and heart attacks were mentioned to me as possible with apnea, so it is worth working toward. My husband never could and finally gave up, so that worries me a lot… I woke up in the middle of the night one night to hear a “glug, glug” sound and he had dumped the poor little machine on it’s nose in his frustration… Keep trying - I’ve been on it for almost 5 months now and it is getting a little easier… I wish I had a suggestion for knowing when you are taking the mask off…

#17

Yes, yes, by all means, yes! A humidifier is wonderful!!! I even have a heated hose. You can adjust the temperature and amount of humidity which is wonderful!! It took 4 years, 3 sleep studies, and 3 different machines with numerous pressure changes while working with the sleep clinic to get my AHI (# of events per hour) under control. Google the side effects of untreated sleep apnea… Yea, I can do without ALL of that!

#18

It is a opioid similar to morphine.The pharmaceutical name is hydromorephone.

#19

Hi Rococco,
Just hang on in there with things, it does get better, its just a case of understanding what is happening to you, and then managing it, if your mask is on the floor every morning as you know you are pulling it off yourself, (This happened to me when I first started 2 years ago.) your Doctor is not wearing the the mask and has no apnoea, so he does not have your problems, he wants to see how you respond to the treatment he has given you, and wants to leave it for a few months to see how you go, so get back to him and insist on getting that pressure lowered, other factors maybe the mask it self, have you fitted it on your face correctly, are you a mouth breather, if so this can cause you problems with the mask, (you may need a full face mask, if you do not have one already) you may also tend to over tighten your straps this will not help you either.

Yes using the humidifier will help you, especially if your a mouth breather, as you may have jaw drop if you are and this causes some leaks and tends to give you a dry mouth as well as nasal problems, some people need the humidifier setting on 3 to 4, so just try different setting on this till you are happy with it, one thing though do not have your bedroom temp to hot else you will be constantly changing the setting, a good range for your bedroom temp is 18c to 20c, well hope this has help you a little, as I say just hang on in there and try not to get to frustrated once you tackle these little problems you will find you can sleep better as your apnoeas low during the night.

#20

Badsleeper,

I have a full mask, becore I breathe mainly with my mouth because of severe hay fever, resulting in extremely stuffed nose. I have a spray to use twice a day.
I will ask them to give me the humidifier part to add to my present pump.
I still seem to be wearing my mask more awake than asleep; every morning I still find it on the floor. I will go see the dr to see what she recommends.

#21

I see so your not a natural mouth breather, sorry to hear about the hay fever, that must be a nightmare at times, and yes do try the humidifier it will ease that blocked nose, I have trouble with a deviated septum, it works for me.

Yes, finding the mask on the floor is a common problem we all have gone through at one time or another, it usually equates to the pressure being not set right, you will see a change once that is sorted, using your mask during the day is a good way of getting used to handling the pressure and the mask.

There is also something else you could ask your Doctor about, and that is changing from cpap to apap?
I mention this as I was on cpap for 18 months and had a very bad time with that, since October last year have gone onto apap which for me is much better as it delivers the pressure as I need it, maybe have a read up on apap first and see what you think.
Take note though, that if you ever did change over from cpap, then it will be like starting over again, and you may experience all those bad things you did when first on cpap, like I said look into it, and ask your doctor about it.

I hope that you get your problem sorted soon, good luck, and please let me know how it went for you.