I feel like a Neanderthal in a room full of modern humans

[crabitha]

I got my sleep study about 12-14 years ago and don't remember the details of how many times I stopped breathing per hour, etc.

I have had the same cpap machine since then. It's the ResMed Compact S8 with a humidifier. My situation was that when I first got diagnosed, BCBS paid for the supplies. Later, they quit paying for it.

So I've had the same machine all these years, and was using nasal pillows that were two or three years old until I found out I could buy them online and started changing them out every couple of months.

Recently (last fall) I started having a lot of nasal congestion and had difficulty using the nasal pillows. I have used my cpap religiously since the day I got it.

I went out and overpaid for a full face mask from a local company that I wouldn't recommend anyone go to. The mask didn't fit right because the people there didn't really care about fitting it correctly. They just wanted me to buy a mask and be gone. I took it back and got a different size and it's still unuseable. During the few nights I tried to use the badly fitting mask my husband told me I was snoring loudly.

I changed insurance companies a couple of years ago and now have my union's insurance (thank goodness). I found out they DO pay for supplies so went to see my doctor who set me up with one of those take home RES MED machines that automatically adjusts. I got a new mask that actually fits and am thrilled with that but I had to take the machine back today. Still waiting to hear results. I believe I can get a new cpap machine with my insurance. I hope so. Mine has logged tens of thousands of hours of use. It's been a good machine.

But I think I need a higher pressure with a full face mask than with the nasal pillows. I figured out how to change the settings on my machine but didn't want to set them too high. Everytime I woke up in the mornings with the automatic machine, it was at 11.8. The clinician set it for between 6 and 12.

I don't want to go too crazy but I'm going to have a hard time sleeping with my old machine after having a fancy new one. Do you have to raise the pressure if you're using a full face mask?

My pressure was 8 but I've been waking up with headaches and nauseous with my chest feeling funny for months so I was pretty sure I needed a higher setting. Since I didn't have the insurance to pay for anything until recently, I've been stuck with what I have.

I know this message is too long. But I'm pretty excited to find this place and just wonder where the heck you all were when I got started. WHen I got my diagnosis, I searched the internet for some community like this but I didn't find anything back then and the only way I found this group tonight is because I googled how to hack my RESmed S8 machine.

I've changed the setting from 8 to 9 but I noticed that it has a beginning rate of 5. Any suggestions? I'm thinking it might need be higher but I don't want to do something dangerous. I just want to freaking sleep.

[trailrider]

Wow! That is an interesting story! You've been there and back again with your experiences and therapy! Someone else here had his calibration go awry after many years (err, the machine's). Other folks here can give you better feedback. Go to the board for your manual (or email). I believe that if you constantly feel "wrong" at the beginning of the night, you should check the starting minimum pressure. We all react differently to not enough pressure coming in. Some feel panicky or anxious. Others feel air hunger and gasp. I feel annoyed and turn my machine up a notch.

Hang in there! People will respond and give you good info.

[retired_guy]

Hi Craby, welcome to the site.

It's hard to advise you without actually seeing what your overnight results look like. You mention that you were pegging 11.8 when you woke up while using the auto machine, but that doesn't tell us if your apnea events were being taken care of satisfactorily or not. Your best bet will be to get a new script from your doc for a fully automatic machine, start therapy with a range going up to at least 14 and see where you're at. On your existing machine you could increase the pressure without being concerned if you wish, but you will not have the ability to know how you're doing except for the "feel good" sorts of things.

What does strike me is you spent years doing well with the pillows mask. I think you might should re-evaluate your move to a ffm. I don't know what pillows mask you're using, but I know my Resmed P10's do a great job of keeping me inflated even though I do tend to have a stuffed up nose lots of times. Many members will suggest irrigating with a nasal rinse before bed or one thing or another, and that's an option although I don't do it. Even when I have a bad head cold the P10 does fine keeping the sinuses open. I do use a size "large" pillow rather than the "medium" I would be expected to use.

[justMongo]

" Do you have to raise the pressure if you're using a full face mask?" -- No.
Your pressure requirements have changed over 14 years. Your old S8 at 8 or 9 will not be enough pressure.
Try to get an auto machine.

"but I noticed that it has a beginning rate of 5" Do you mean the ramp feature is on and it starts at 5?
If so, turn off the ramp.

bump up the pressure a bit and see how you do. But, press for the auto machine.

[trailrider]

Does your medical system not require you to do a titration study after so long to verify your Rx? This seems so odd to me.

PS. You are not Neanderthal. Just "experienced". Or "well-documented".

[crabitha]

Thanks for all the ideas/advice, suggestions. I have the ramp turned off. I never had that on. It was on on my test machine I've had this week and I felt like I was suffocating so I turned it off. On my S8 I guess that 5 has no meaning since I don't have the ramp on.

I'm afraid to turn the machine up too much because I don't know what I'm doing. I just turned it up to 9.

I am pretty sure I'm going to get one of the automatic types. I am very excited but kind of trepidatious about going back to my s8 after a week with automatic thing.

I much prefer the nasal pillows (have to use a chin strap though) but I don't think the 8 is enough pressure to blow through any congestion. I will definitely go back to them once I figure out what is causing my allergies. Like the mountain of dust under my bed. Or it could be that my nasal pillows (that came with the s8 are just so old school. My nasal pillows are the Mirage Swift II. Because the hose fits in the side, I think it's waking me up when I goss and turn a lot because it gets loose, etc. I love the pillows, my clinician who set me up with the test machine said I should be able to get insurance to cover some in about 3 months. Hell, I would pay for them out of my pocket if I had to. As I said, I just want to breathe and feel good again.

Interestingly my doctor was surprised that my pressure needs would change because my weight hasn't changed. I thought that was odd. I'm older, muscles are probably not as fit and what not, I don't know. Other health issues have cropped up (goiter with hypothyroidism) so I'm thinking it's probably not that unusual to need a new pressure if you have health changes. The goiter alone I think could interfere. But I'm supposed to get a new bionic knee in about six weeks and it's become very important to me to get my cpap issue sorted beforehand. I'm terrified of surgery and feel strongly about having my cpap with me wherever I sleep.

[trish6hundred]

Hi crabitha,
WELCOME! to the forum.!
Hopefully, your insurance will help you get a newer machine, as you would be much better served by the newer technology.
Hang in there for more answers to your questions and much success to you as you continue your CPAP therapy, good luck getting a newer machine.

[retired_guy]

I'm terrified of surgery and feel strongly about having my cpap with me wherever I sleep.

You don't need to be terrified of the surgery. Some of our finest around here have had one, two, or maybe more knee's replaced. They're getting amazingly good at doing that sort of thing these days.

You will definitely want to make your docs/anesthesiologist aware that you have sleep apnea so they can mask you up appropriately before and after surgery.

[Sleeprider]

Many years ago I had the Mirage Swift II pillows, which I thought were at least better than the Comfort Gel nasal mask I originally had. I moved to the Swift FX, and recently discovered nasal pillow nirvana with the Resmed Airfit P10. You know how the exhaust is always blowing on something and waking you or your partner? The Airfit is absolutely silent and no jet of air.

I used my original machine from 2008 until December last year. It logged over 19000 hours, and that's probably a fraction of what you have on your S8. You're going to love the replacement. Hopefully you will get an auto cpap and can start monitoring your sleep data. It makes a big difference knowing what is going on and taking control of your own treatment.

Like you, I have not had a sleep study since 2008. My last machine was set on 8.5 - 12 pressure. When using an auto now, I use 11-14. I got a auto BiPAP and use higher pressure on inhale on that, but my minimum pressure is at least 2.0 cm higher than original. Between the better machine and Airfit mask, my sleep is greatly improved and AHI numbers are generally around 1.0

Good luck and embrace the modern technology. That old doorstop has to go.

[archangle]

Welcome Crabitha

Interestingly my doctor was surprised that my pressure needs would change because my weight hasn't changed.

There is more than a grain of truth in the idea that apnea=fat, but it really doesn't correlate that much. Unfortunately, a lot of doctors don't realize that. It's partly out of date thinking and it's fun to the doctors to fat shame their patients instead of going to the effort to figure out the real cause and cure.

That's clue number 1 that your doctor is clueless about apnea, but most docs are pretty clueless about apnea, even those who are "sleep specialists." It's part of modern assembly line medicine.

That makes it doubly important for you to get a fully data capable CPAP machine and learn how to manage your own CPAP treatment.

Read the Useful Links in my signature line below for some links on how to not get screwed by the medical mafia, especially which CPAP machines to get and avoid, and how to make the system give you the right machine.

Once you get your new machine, get the SleepyHead program and learn how to check your own data.