SleepyMommy703

I'll just share my personal experience with the same machine. I required a pressure of 9 in my original CPAP study, and when I took my machine home it was set to a range of 5-16. My average pressure was 9, but it was going as high as 12 at times. It was definitely going far higher than I needed though and I had side effects from it. Difficulty with mouth breathing even with chin strap, dry mouth, bloating, lots of leakage, etc. My more recent study showed I only needed a pressure of 7 to alleviate my apneas and so now my machine is set to 7. No more trouble with leaks, dry mouth or mouth breathing, and so far no bloat.

So I'd be cautious about going too much over what you actually need as it can cause problems.

Thanks. They did do the daytime test for narcolepsy with my first sleep study 12 years ago. While I slept easily all 5 times they asked me to nap, I did not reach REM so they said it wasn't narcolepsy. Although one of the doctors seemed to indicate that there may be a bit of a spectrum for narcolepsy or "narcolepsy-like" disorders. Either way it sounds like the treatment will end up being the same which is a daily dose of something like Provigil to keep me feeling more awake and alert.

I'm curious how often other CPAP users are getting replacement parts for their machines. Particularly masks and cushions. I read all sorts of different recommendations online about how often you should get new cushions or a new mask, but it seems like it varies by perhaps both insurance and what medical equipment company is used.

My prior medical equipment company sent the masks and cushions separately and sent me several extra cushions with my first order. The company I'm using now only sends the mask and cushion as a set and only replaces them once every 3 months. The hose gets replaced every 3 months as well. I think part of my issue with excessive leaks is that the cushions do not last anywhere near 3 months (possibly because I have oily skin). Some of the sites I'm finding online suggest replacing cushions at least 1-2 times a month, so I'm just wondering in practice how often people are actually getting new cushions, masks, hoses, etc.

My doctor also just added liners to my prescription so I would assume this would help lengthen the life of the cushions as well? No experience with them as of yet.

Thanks! The new mask may be just what I needed. It fits so much better and is registering no leaks now 3 nights in a row. My machine was set to a range of 5-16 and I know went as high as 11/12 at times but 9 was the average I gather. It looks like they now set it so it goes no higher than 7. Is that typical?

Anyhow with a pressure of 7 my AHI is still below 1, so it seems to still be working. I have a tendency towards a lot of annoying side effects from CPAP and from what I'm reading it sounds like if the pressure goes higher than what you need it could be a cause of a lot of these issues. So hopefully this will help both my fatigue and reduce the side effects. Fingers crossed!

We have spent years looking into other possible causes for my fatigue. Vitamin deficiency, thyroid, sugar, etc. have all been looked at many times. I'm now on an SSRI as I do have issues with both anxiety and depression, but I don't think that's the cause of this level of fatigue. One of my sleep doctors suggested I may have trouble cycling from sleep to awake, that my brain gets stuck in sleep mode essentially. And my current doctor suggested that there are some people who literally need 12 hours of sleep to function well and that I may be one of those people. If these latest changes don't help the next step sounds like a daily dose of something like Provigil to help me feel more awake and alert.

Trying to be hopeful for now.

Yes, your AHI is the number of apnea events per hour. For successful treatment they say they want to see a number under 5 so looks like you are doing great.

So I just had my overnight sleep study at the center to follow up on my home study that showed "significant respiratory disturbances." I haven't seen the doctor yet for my official followup, but the only thing the tech said to me in the morning was that they didn't need to give me as high of a pressure as my machine was giving me at home so he thought that may be my issue. During the study he only gave me a level 7 and at home it's averaging around 9. He also said this could be because of issues with leaks with my current mask. The one he used for the study definitely felt more secure and had far less leakage than my average night of sleep. But he also had me tighten my chin strap to a rather uncomfortable level too. We'll see what the doctor says, but maybe a new mask will be of help.

I'm also wondering if there could be an issue with my machine. I have the Resmed Autosense 10 (I think that's the name?) and I normally leave the ramp setting on Auto without an issue. Last night I put it on and was still awake and watching tv breathing normally. Within 10 minutes it had ramped up to 10.6 and was still climbing. It shouldn't do that if I'm still awake and just breathing normally right? I had 2 faulty machines prior that weren't giving correct pressure with the last model so I hope I'm not having this issue once again.

The reasons for my studies were that despite treatment for months I'm still tired all the time. I do have some improvement and my AHI is usually at or below 1 on the machine. I don't get as many headaches and when I'm off CPAP I notice short term memory issues and a lot more brain fog. But I still feel like I could sleep all day pretty much every day. Could too high of a pressure still make me so tired?

Just wondering if anyone else experienced this. Thanks!

I have read that some people can take a full year of treatment to feel the benefits. That said I did 10 months initially and didn't feel much better and I'm back on CPAP now for 7 months and still feel exhausted all the time. My doctor did an at home study to determine if the machine was working as well as it said it was. The at home study indicated that I'm not having apneas, but showed frequent respiratory disturbances. Now they have ordered an overnight study at the clinic to see if they can determine what these disturbances are and if they are part of why I'm still tired all the time. Otherwise our next step was also something like Provigil to help me feel more awake during the day. I'm also super hesitant to try that option as I'm extremely sensitive to most meds and tend to have the worst side effects. I also already suffer from anxiety which is one of the side effects.

They also had already ruled out thyroid issues, anemia, etc. via bloodwork.

I wouldn't change your pressures without a doctor and would make sure you are following up with them. I know some sleep doctors aren't very proactive and prescribe the machine and rarely see you again. So far mine has had me continuing to come back and follow up, change masks, do further overnight testing, etc. to try and get me feeling better. Maybe find another doctor if yours isn't doing enough for you.

I can't say I've ever noticed a strong sour smell, but I do occasionally get a musty sort of odor like when you leave a wet towel in a pile of clothes and it stays damp too long. That's usually my hose and mostly happens with my heated tubing that tends to have water build up. I do also notice that strong smells in the house can build up in the tubing as well. Like if my husband is cooking something with onions for breakfast it comes through and can settle in the tubing. But you'd likely notice if there was something in the room giving off that strong of an odor.

I was always told only to use very mild cleaners so I'd be hesitant to use bleach. Vinegar usually works well to remove odors and will kill bacteria as well. I mostly just soak my CPAP parts but also occasionally notice the red buildup as well so I wipe it out when that happens before soaking.

When you first mentioned sour I wondered if you have a problem with reflux? If it could be from your exhaling and it just being absorbed into the plastic as plastic tends to hold smells? Or along the same lines is it actually even in the parts or if something like reflux are you just noticing/smelling it as you are breathing into the mask/tube?

Those are the only things I could think of but maybe someone else has experienced this.

What is your AHI?

You are definitely going to need to get in the habit of cleaning your skin before going to bed. I've found the easiest thing for me is to use the makeup remover wipes. I just keep them on the table next to my CPAP and use them right before going to bed. I'm also a mouth breather and have very oily skin as well. I could never get a good seal with a full face mask so I use a nasal mask and a chin strap. I still have random nights with more leakage and notice that I have to clean my face during the night to stop it (I just take a tissue and wipe off the excess oil). I did just ask my doctor to add liners to my prescription, so we'll see how much they help.

But as for the rest of it, yes you will get used to it.