Hello, I'm new

[Janilaine]

Hi,

I have been visiting your site for a couple of months and finally registered so I can begin posting. I've been using a CPAP with a setting of 9cm since mid October. I had problems with compliance until I switched from a full face mask to a Swift FX. The new mask is comfortable; some nights I forget I have it on.

I hope you don't mind me jumping in with my experience as I need some advice.

I am not getting the results I hoped I would. I expected to wake with unlimited energy, improved diabetes and no depression. While I think I do feel a little better, it is not what I hoped for.

My AHI numbers aren't what I think they should be. During my sleep study my AHI was about 24 per hour. With the CPAP machine at home, my 7 day avg. is 7.1 and my 30 day avg. is 6.7. My periodic breathing is 10% at 7 days and 9% at 30 days. My large leak rate is 0% which I assume is good.

I saw my sleep doctor last week and he said that the AHI was just a little more than my titration results (5 per hour) and seemed OK to him. I recall reading that some doctors are only interested in reviewing sleep studies and prescribing equipment. I'm afraid mine is one of those. He doesn't seem interested in working with me to get better results. When I told him I am still waking frequently and feel tired during the day, he said some of my other health issues could be to blame. I think a switch to a different doctor is in my future.

I am considering buying the software for my machine so I can get a better look at what is going on. Before I do that, I think I'll take the memory card to my DME provider to see if they will down load the data and maybe they will have some suggestions for me.

I would appreciate any comments and offers of advice that you can give. Thanks! Janis

[rosacer]

Hi Janilaine welcome!

It would be very good if you can get the software and check what is going on each night.

IMHO your AHI is too high if you still feel tired each morning. Did you get a titration? What was the pressure they found to be your 90% ? Is the machine adjusted at that pressure? Are you sleeping the whole night with your machine?

At the beginning I was on CPAP, my AHI was on what could be considered and acceptable number but everyone of us is different an sometimes need a lower level that what is considered acceptable. My Dr and therapist told I complained for nothing but I was tired even after 8 hours of sleep. Presently my AHI is around 0.6 to 1.8 (for a Respironics machine), it changes each night an I feel rested in the morning if I have slept enough time.

If your machine is adjusted at the 90% pressure at titration you would maybe need to try to increase your pressure and try to see what happens. You increase it only 1CMH2O for one week and then you check want it produces as feeling at wake up and AHI.

I discovered my pressure was not the good one, it have been several people here who had incorrect pressures at titration. But you would need to have the software to really survey your response when you change pressure and adjust it the closest possible to the good one for you. I'm sure you can have better than what you have now. The other thing I discovered is my apnea is very positional, in those cases you need more than one night of titration to find the real pressure for a low AHI.

If I sleep lets say 6 hours with the machine and 1 or 2 hours without the machine I will wake up very miserable, dizzy, head ache, tired, useless. Same thing if I take a nap without the machine, I would do best of not napping at all. It seems I can't afford a low oxygen level on my brain anymore.

All the best

[Janilaine]

Rosacer, Thanks for taking the time to respond.

Yes, I had a titration. The pressure was taken up to 11 but the summary report states that at above 9 central events occurred. So I assume that is why they settled on 9. Is that what you mean by 90% of the titration level?

I do sleep most of the night with the machine and I try to make myself keep it on for all night. I still wake frequently and go to the bathroom once or twice a night. It is hard to make myself put the mask back on when I don't feel much different if I sleep with the CPAP or if I don't. Sometimes I nap without and can't tell the difference.

One thing I didn't mention before is that with the Swift FX I don't inhale through my mouth but some nights I wake with aire escaping through my lips. I've tried a chin strap but it slides off the top of my head. Maybe I'll have to get another but I hate to add more straps on my head! I tried tape one day but it hurt to pull it off so I didn't do it again.

I can understand why some folks don't get the right setting number straight away. The sleep study itself is such an artifical situation and the time actually spent sleeping is less than it would be at home so the techs get a limited amount of information on which to make decisions.

I understand about the sleeping position too. Before the CPAP I tried to sleep on my side and got intot he habit. So during the titration, I wasn't sleeping on my back when they went up to 11 so they didn't get to check my REM in the sublime position.

Janis

[rosacer]

Hi Janis

What the 90% pressure is? check here

viewtopic/t35196/What-is-Average-90-CPAP-Pressure.html


I don't know what did you use to tape your mouth, I used a couple of times medical paper tape, it is easy to take in the morning. I did that a couple of times, then I changed and I only put a small piece in the very front of my lips and went to bed thinking I needed to keep my lips closed, I did it a couple of times and now I remember in the night I need to keep the mouth closed and I don't use tape anymore. I keep the mouth so closed that I'm having problems because my thong is pushing my front teeth; now I'm telling to myself "do not push the teeth keep the thong gently against the roof of the mouth don't push the teeth" Try it, maybe you will succeed too without any problem.

In any case you need to keep the pressure inside you, other way the treatment it's not working properly. You say you didn't see any leaks, any ways if you stop leaks you could improve the results.

I don't know what to say about the centrals appearing with higher pressure If you install the software you will be able to have more information and something can be fixed to reduce the AHI. Ask how useful is the software we can buy, other way ask if is somebody can send you a link for Encore Pro. Mention which Operating System you have in your computer that's important.

[SleepyT]

Janis,
Welcome to the forum! I hope you can find some good help here. I agree that your AHI could be lower. I don't have specific answers for you except to experiment with ways to improve your therapy...and getting the software will definitely help you see what's going on. Good luck!

T.

[Uncle_Bob]

Hi janis and welcome the forum. Please check you PMs

Cheers
UB

[Janilaine]

Thanks for the responses! I am going to get the software and talk to the RT at my DME provider.

I think I'll get a lower and upper lip piercing and a little padlock to prevent my mouth from opening. Or maybe not.

Janis

[SnoozyQ]

"I think I'll get a lower and upper lip piercing and a little padlock to prevent my mouth from opening"

I love it!! LOL

Welcome

[Tired Linda]

I think I'll get a lower and upper lip piercing and a little padlock to prevent my mouth from opening.

Perhaps we can get a group discount

Linda

[Janilaine]

Linda,
Yea, let's start a new fashion trend.

[Tired Linda]

Well, actually I've been trying to figure out how to respond to your posts. You have a lot going on. My fashion-conscious pierced (and tattooed) daughters would say we need to "slow your roll" a little bit Patience and persistence are the keys here. It's easy to get frustrated. I could have found many reasons to throw in the towel, but I decided quitting was not going to be an option after I began reading about the long-term effects of OSA.

I've been on this journey since mid-August and only in the last week was I able to find the right mask (tried 8 others) and get my AHI consistently below 5. I've finally begun really sleeping. Yes, some people do slap on a mask one night and wake up raring to go and never look back. It certainly hasn't worked that way for me, and there are plenty of others here who have had the same sort of trials.

I'm still not bouncing with energy, I still take meds for depression and high blood pressure, but I have hope. The fog is leaving my brain and I am a lot calmer inside.

It didn't take me long to figure out I was a mouth breather. I tried a Swift FX, Swift LT, and another one (?) Never could keep my mouth shut. I've taped (4 or 5 different kinds of tape, various configurations), used Poligrip strips to seal my lips (sometimes also taping), used a boil and bite mouthguard (spit it out) and any other type of hint I found here (except a chinstrap, I think those are creepy, go figure.) I tried 3 or 4 full face masks and it didn't take long to realize that was going to work best for me, I just needed to find the right one. The mask is probably the biggest key to this whole therapy.

And, so is the software so you can track your nightly data to see how your therapy is going. It will help you trememdously when trying to figure out if your mask is working for you. There are lots of people here who can help you learn how to read it and understand what's going on.

Yes, do take your memory card to your DME and see if they can give suggestions. I must caution you, though. It's going to depend a lot on the type of DME you have. I'd send my card in for a "compliance" check and get a phone message from my DME gushing on and on about how wonderful my compliance rate was...never one word about my AHI being anywhere from 5 to 10 or more or even bothering to notice I switched my machine from APAP to CPAP. It's the helpful people on this board (and a mighty big stubborn streak I have) that got me through

Keep reading and asking questions. Be persistent, and the answers will come. Best of luck to you,
Linda

[Janilaine]

Linda,

Yes, I've already realized that I can get more help here than from my DME. Wouldn't it be nice if we didn't have to be our own advocate and could just sit back and be sure we were being taken care of? I guess those days were over when we started kindergarten.

I was first given a full face mask and didn't like the feeling of all the straps and having so much of my face covered. The Swift FX is so much more comfortable. I hate to add a chin strap but I may get on of the ones with multiple adjustments in hopes of improving. I think the hybrid type mask might be a good alternative and I may try that when it is time to get a new mask.

Thanks for writing and keep plugging along. Janis

[jabman]

Yes, some people do slap on a mask one night and wake up raring to go and never look back.

Hi Janis and welcome,

Sorry I have no real advice for you because I am one of the people Linda mentioned above.
I do hope you do stay persistent and ask lots of questions, the people here are all great and someone will be able to answer your question. Once again Welcome to the forum.