New(ish) diagnosis - sleep apnea


#1

This is a bit off-topic but I know several here live with sleep apnea. I was diagnosed several years ago with mild sleep apnea that needed no treatment. I just got re-tested and the results came back saying I have moderate sleep apnea, so my doctor prescribed a CPAP machine. I have an appointment to get set up and trained in mid-November. They said I will get a loaner machine for a month so that I can try out various options before deciding what to purchase.

I’m just wondering if anyone here has any tips, and also if anyone knows of an online resource similar to TuD for sleep apnea. I travel quite a bit for work, including an overnight trip the week after I’ll get the CPAP, so have questions around that aspect in particular.


#2

My wife and I have been on CPAP for a number of years. My case is borderline and approved ONLY because I’m diabetic. It’s even possible, since I’ve lost some weight, that I could get off CPAP. But that would require another sleep lab test.

Our machines are not the latest versions, so I believe there are more compact versions currently. Size would be important, particularly if air travel were involved.

I believe your training session will give you most of what you need to know. Picking the mask is probably one of the more important issues. Some people feel claustrophobic, particularly with full-face models. But full face masks may be needed for wearers who mouth-breathe or who have facial hair. I use a mask with only nasal canulas and a simple strap arrangement. It is the most minimalist mask I could find and it works for me.


#3

@Jen There are several user groups for sleep apnea that I have found, but the one I like the best is https://www.apneaboard.com/ . As a member I can download sleepyhead and user manuals that the Dr’s use to program the machines. I saw a specialist for the first 18 months who became frustrated when I started asking for his reasoning with his recommended changes. I didn’t object to them, just wanted to follow the logic. Like here, the apneaboard group is a user focused.

I would suggest too that you try as many of the mask options as possible before committing. FWIW, aside from the machine that requires an RX, no other parts do. I routinely buy replacement parts and full masks on Amazon which are seriously cheaper than my insurance.

Hope you enjoy you new best nights sleep! :sleeping_bed:


#4

Thanks for the information, @DiabetesOldie and @El_Ver. I have pretty severe allergies, so I’m almost certain I will need a mask that lets me breathe through my mouth because some mornings I wake up unable to breathe through my nose (though other mornings are fine). I worry slightly about those suffocating me if there were a problem, even though I’m sure they have many safety measures put in place. I’m hoping that they give me a variety of masks to try. I’m also hoping that the machine has a high-contrast display.

I was honestly quite surprised when I got the call today, because I thought they were calling to say they had to re-do the test, as I didn’t sleep well that night! But I’m surprisingly not upset at all about this diagnosis because I’ve been feeling like an utter zombie for months now. Tired all the time, sleeping away weekends, unable to think at work, can’t concentrate on anything, sometimes feel like I’m just moving through a mental haze. And that’s not even mentioning the physical exhaustion piece, which is just as problematic. I also have other health pieces on the move, but I’m hoping that this is one piece to the puzzle that will help me finally feel better!


#5

The worst thing that could happen is that you have a power outage. But that would wake you up, just like not having a CPAP! Can’t imagine you suffocating from a CPAP under any circumstances.

I do have a machine with a high-contrast display, but I’m not sure that’s really necessary. On a day-to-day basis, I don’t look at the display. I put on the mask and push one button and I’m in operation. In fact if I just take a few deep breaths, it just starts without using the button. I have occasionally changed the heat/humidifier settings, but that is easily done.


#6

I just say this because I’m legally blind, so those black-on-grey displays are literally impossible for me to see, and they are very hard to magnify with a cell phone camera. Hopefully they will provide a choice.


#7

@ Jen, I have a now older ResMed S9. The screen is super small but in color. I think the newer machines are much easier to see. As far as masks go, I went by nature (cave man) and finally settled on a ResMed AirFit mask. Covers mouth and nose, and the bonus for me is I can get it with either memory foam or Silicone . The memory foam is cushier but wears out faster. The silicon lasts a year or more before it needs to be replaced. The Airfit also has , for me, a very comfortable headstrap with a magnetic closure (instead of a snap). I find it much more convenient and easier to use, though I never thought magnets would do the job.

When you decide on your mask and are using a silicone cushion, the silicone will start to discolor over time. There are tricks to renew it easily. Happy to share when you are ready.


#8

As El_Ver stated above, DiabestesBoard.com is an excellent resource, as is http://www.cpaptalk.com. Experienced members on both sites have helped me several times with settings and mask issues.

Best of luck.


#9

One thing I’m wondering — and I guess I’ll find this out at my appointment — but are different masks interchangeable with different machines? Or do they have proprietary connections that only work with machines made by the same company?


#10

Jen, I’m sorry to read you’re up against another challenge. I have three siblings who uses CPAP machines. They all said that they felt much better using the CPAP and had more energy for their daytime activities. Good luck with getting your kit set up!


#11

yes in general, any mask will work with any machine.


#12

I got the CPAP machine today (well, the one I’ll have on loan for a month before hopefully getting my own). I tried it briefly in the office and, wow, weird feeling. It’ll take a while to get used to. It’s quite a bit more involved than I thought it would be, with weekly appointments for the next month.

I found out that they will take care of all the insurance stuff for me, so fingers crossed my insurance covers the machine and related equipment (I meet all their criteria, so hopefully it won’t be a problem). I also got a copy of my sleep study, which is a much more detailed report than the one I got done several years ago.

I will be very curious what tonight is like. The lady already went through the statistics the machine generates and gave me targets to aim for, so that fits very well with how my brain already works with diabetes! Definitely feels like I’ve stepped into a new world with so much new terminology and equipment to get used to.


#13

I have severe obstructive sleep apnea. My untreated AHI was 88 per hour! Unfortunately, APAP did not work for me. After six months of trying, my doctor ordered a bi-level machine for me, and I’m waiting for that to go through. Unfortunately, I have little faith that it will work.

As was mentioned above, getting a mask that fits properly is an important part of achieving success. After trying seven different masks, none can handle the higher pressures that I apparently need to combat my problem. I’m willing to try a few more, but I’m not too hopeful. It is unlikely that you’ll have as much problem as I’ve been having. Certain aspects of my facial shape just don’t allow most masks to fit tightly in my lower face. But if you do have problems, don’t give up easily!

I checked out several apnea message boards and the one I found most helpful was the one mentioned by calderonsgd, www.cpaptalk.com Some very knowledgeable people there.


#14

Thanks, @Uff_Da. I sure hope you can find a solution to your sleep apnea soon. Yours does sound much worse than mine. My AHI was 18 and my oxygen dropped to 78% overnight. The nurse set the pressure to 5-15 and the machine automatically adjusts within that range throughout the night.

Today they gave me a Resmed AirSense machine (the “for her” model) with a nasal pillow type mask. I expressed concerns about allergies and the fact I often wake up unable to breathe through my nose, but the nurse thought I should start out with this one and I can always switch to the other type when I see them in a week if I have problems with this one. I’m wondering if it wouldn’t be good to have both types anyway, as I might use one type when my allergies aren’t bad (like now) but want to use the other type when it’s full-blown allergy season.

I have been browsing the two sleep apnea forums mentioned in this thread, but I haven’t yet joined either of them. I’ve been a member of a sleep apnea group on Facebook for some years, so did post a question in there tonight (I forgot to pick up distilled water on my way home). I’m still adjusting to the whole idea of this diagnosis, and I think as I get more comfortable with the CPAP machine, I will be more comfortable joining those forums and really digging in. Certainly, once I get the letter that my insurance will cover a CPAP, I’ll be checking in to make sure I get the best machine. Though from what I’m reading, the one I got today seems pretty good.


#15

The machine you got seems to be one that is highly recommended by the experts on the message boards. I also have a Res Med AirSense, but not the for her model, which I understand has some additional settings that may or may not prove useful.

Did your machine come with an SD disk? If not, you can always get one separately. Then you can download the Sleepyhead software and really check out the details of how you are sleeping. I discovered that even with the machine many nights I’d have apneas that lasted over a minute, sometimes several in a night. Once I had one that lasted 102 seconds! “They” say that one loses brain cells if one goes without breathing for more than one minute, and when that happens time after time, it is definitely not good.

If you post the results of your Sleepyhead SD to one of those message boards, the experts on the boards can give a lot of helpful suggestions.


#16

That’s great to know! Thanks. :slight_smile: Mine does have an SD card in it, and also apparently a cellular connection. I imagine that at my weekly appointments that data will be analyzed to help fine-tune the settings. I had read about the SleepyHead software but wasn’t sure what it was. I will look into it in more detail on the weekend when I have a few nights’ of data. My next appointment with the CPAP people is on Saturday.


#17

With weekly appointments, your experience might be better than mine - or than most experience. My DME seened mostly interested in helping only if they could get me to buy more supplies. In my experience, the help from the experienced souls on the message boards was far superior to any either the doctor or the CRP at the DME provided. As far as I could tell, the Sleepyhead software also seemed to have some parts that even the doctor and the DME didn’t seem to have, or at least were willing to take the time to read.

When you get to a point it seems appropriate, the members will link you to videos that help you understand some of the details of the Sleepyhead data, such as how to tell true apnea events from what the machine sees as events but that happened when you were really awake. It isn’t perfect, but there are also clues that help you conclude whether or not you were sleeping when an “event” occurred. It is necessary to zoom in on the breathing wave form to tell. Pretty fascinating stuff if you are into data beyond that which the doctor and DME usually provide. You can also see how often you snored and some clue about the volume of the snores. :sleeping: Fun stuff.


#18

I’m excited to get my hands on this data. I downloaded the Sleepyhead software in the middle of the night last night. I managed to wear the CPAP (APAP? since it’s in auto mode?) for nearly eight hours, but I didn’t sleep so much as just dozed on and off. I found it hard to breathe through my nose at times, and at other times I think the machine changing pressure (or something else about the stream of air) woke me up just as I was dozing off, and at other times the noises were distracting. But actually at other times things were quite relaxing and cozy, especially when I got my breathing steady and with the bit of heat coming through.

The machine’s pressure was all over the place; from the few times I glanced at it, I saw 5.6, 11.8, 9.2, 12.7… According to the statistics in the morning, the AHI was 0.0, so that’s really good. Hopefully it is that good when I sleep for real! I would be interested in understanding exactly what makes the pressure go up and down and how it decides what level is needed at any given time.

Surprisingly, I’d say I’m pretty wide awake today considering it wasn’t the best night’s sleep. So that’s a good sign.

Of course, this morning I was so distracted with all this stuff that I forgot to bolus for breakfast. Cue 30.9 mmol/L (556 mg/dl) blood sugar. I possibly left my pinp disconnected for over an hour as well. Oops. Still trying to get out of the 20s mid-morning.

I am looking forward to tonight and to eventually downloading that data. I may wait till I have my own machine because I’m a bit paranoid of messing up their SD card and having someone get mad at me.


#19

Good luck with your journey. Don’t forget: sleep hygiene and light exposure are a very important component of your treatment. Don’t watch tv in bed, try to go to bed and wake up the same time every day, When you wake up make the house bright and then in the evening turn down the lights and turn off the TV about an hour before bed. Make sure to have your Vitamin D level checked every 3 months (mine was very low), as absorbing light is an important part of the sleep equation. I’m not a mouth breather; but if I’m stuffed up, often the humidified air from the CPAP machine will help clear me up. Best.


#20

Thanks for the tips! I try to do most of these. I actually slept for seven hours last night. According to the machine statistics, my AHI was 1.7, so that’s really good. However, I woke up an hour earlier than I was supposed to feeling quite wheezy. I got up and used my inhaler and cleaned all the CPAP equipment. Hopefully the asthma is just a fluke and not anything to do with the machine.