Almost 2 years and no better sleep

I've been on cpap and apap. Should I try bipap next?
I don't get good sleep. Still tired all day. Don't know if its the machine or the masks. I've tried quite a few masks including nasal pillows, nasal masks, full face, and simple cushions.
I'd try a dental device but my sleep doc says they don't do any good.
Any suggestions?

Hi jomac!

Good to see you posting, but gosh, I'm sorry to hear things aren't better for you. Wish I had a suggestion, but there could be sooooo many things that can cause a person to not feel rested, even if "cpap" (any kind) is doing fine. What kind of AHI are you usually seeing?

When you say "don't get good sleep", do you have a difficult time getting to sleep or staying asleep? Can you go back to sleep easily if you wake up during the night?

Wow, that's a long time to not see improvement. Sorry for the following questions, but here goes... Are you working with a doctor or are you doing this on your own? Have you had any follow-up sleep studies? What does your data say about how well you treatment is working? Maybe you could post some recent data on here for the data gurus to look over.

If your data looks good and mouthbreathing is not an issue, I'd have to wonder what else could be going on. Sure hope you find answers soon, even if it means another sleep study if one hasn't been done recently. Best wishes.

Kathy

Hi, yes it would be helpful to know what happens when you sleep, what your impression of the whole thing is in the a.m. and what you might have tried along the way. The first thing that strikes me is that you use a nasal mask, and while that may be fine, and we've all been there, many of us discover once we're 'tuned in' that in fact we sleep with our mouths open (you can't know it yourself... someone needs to tell you) and if you're on Cpap, you lose all the 'good' air that way, so even turning your pressure up higher doesn't help and, in fact, can even make things worse. If you think it even remotely possible, then you need to try either a full face mask (doesn't cover your whole face, just your nose and mouth), which is the 'standard' fix, or (at least to try a cheaper test) get some 1" wide. 3M micro- or transpore 'surgical' tape at any drugstore (may come in a Scotch tape like dispenser but on diff. counter - ask the pharmacist). Use ~ 2" to cover your mouth overnight (it peels off quite easily in the a.m.) and see if it helps any. It made a world of difference to me and others and I now use a proper FF mask. You'll also see "chin straps" noted as a fix for the problem, but they just don't really work very well for many. If you do have this problem (open mouth), you won't believe the difference in how you feel once you've tried a fix for it.

I had a sleep study done in June of 07 and had was put on to CPAP. ABout 3 months I was having problems with the cpap. I found I was taking the mask off and also was having a lot of burps. So I talked to the doctor about this and he felt that a dental device would be good. He suggested that I see the dentist. He sent me to a real good doctor who deals in sleep apena. (Sleepapenadentist.com) She felt I would do good and so I got the herbest appliance. I did get insurance to pay for it in full. They only paid part but I appealed 2 times and they paid in full. I also had lost over 70 lbs since June of 07 and so the doctor wanted to do another sleep study and we did that in Sept. of 08. All my numbers were real low and the dental device worked real well. Both of them were pleased with the numbers. My doctor said that since I lost all the weight I did not have to use the cpap or dental device unless I need to. I still wear the herbest retainer. You can search here for the information on my dental device and see the test results. If you have any questions please e-mail me.

Chris

Do you have the software and reader so you can take needed control of your treatment. Without it it's hard to get better treatment. jim

I've been on APAP for around 5 years now. The results have been very variable due to a number of issues. By a process of elimination I've resolved some of these and worked out the causes.
1) I was mouth breathing, so tried a full-face mask. This was not very comfortable, leaks caused facial sores, and made noises that wakened me. I now use a chin strap all the time and a nasal mask. That seems to work better.
2) I had a follow-up sleep study that showed I had restless leg syndrome. This was attributed to a side-effect of medication I was on. A change of medication solved that problem.
3)The same sleep study showed I was snoring while using APAP, the machine seems not to detect and correct this consistently, I don't always snore. Resmed's advice line suggested I should turn up the humidifier setting. That seems to help.
4) Since starting APAP I have had periods of several months when I feel my daytime fatigue, lack of concentration and poor memory are almost as bad as before starting treatment. I eventually realised that these periods were mostly in winter. Other times I'm OK.

I think that in my case the humidifier setting is critical in determining whether I snore or have similar airway resistance that causes arousals, rather like untreated apneas. In winter if the room is not heated at night much of the humidity from the heated humidifier is lost as condensation in the tube, so the setting needs to be higher. When its very cold I heat the room, which also helps a lot.

Sometimes all these don't work and I'm still fatigued all the time. I'm currently experimenting with using the machine on fixed pressure rather than auto. I'm waiting for a date for another study to see whether I'd be better on fixed pressure, and to titrate the pressure properly so arousals due to snoring are eliminated. In the meantime I set the machine to be constantly on the max pressure indicated by the display when it was on auto.

All this says go back to the sleep centre and find out what the problem is. Don't let it drag on for 5 years like I did.

Hope things improve.

I don't really understand the reports. Here is what it says (I'll list a few days)
12/2/08
at pressure of 6, 220 minutes,55.8% of night,flow limitation 0,Vs=28.1,non responsive apnea/hypopnea=0,OA=0.0,hypopnea=3.8, AHI=3.8
at pressure of 7 AHI=5.2
pressure of 8 AHI=10.3
pressure of 9 AHI=6.5
pressure of 10 AHI=7.3
pressure of 11 AHI=12.
pressure of 12 AHI=51.4
pressure of 13 AHI=60.0
The report says that night my average AHI =6.7
I don't understand why it says 90% at a pressure of 11. I spent 57 minutes at this pressure and 220 minutes at pressure of 6.
Shouldn't 90% of the night be the 220 minutes??

12/3/08 AVERAGE AHI=6.2
12/4/08 AVERAGE AHI=14.3

What makes the AHI so high? Is it the mask or the pressure of the machine.?
Also I cannot tolerate the humidifier on because the heated air makes me feel suffocated.

My next appointment with the sleep doctor is january 23.

I guess the 90% means that 90% of the time you have had the pressure 11 or below (including the 220 mins at 6).
Your situation looks like mine, at higher pressures the AI gets lower but the HI gets higher.

I'd also like to hear some advice what to do.

jomac30 wrote:I don't understand why it says 90% at a pressure of 11. I spent 57 minutes at this pressure and 220 minutes at pressure of 6.
Shouldn't 90% of the night be the 220 minutes??

The 90th percentile pressure doesn't mean it used that one pressure ninety percent of the time. The 90% means the machine used that pressure and pressures below that pressure, ninety percent of the time.

Would I be better off to go back to my old cpap set at 13? I think I had a lower AHI on that, but I'm not sure if it was because of the masks. Lately I've been switching masks because I can't get one that's comfortable or if its comfortable it leaks air.
I usually wake about 6:00, take off the mask and sleep for another couple of hours. I'm more comfortable without the mask and I think I sleep better.

on on Thu Nov 15, 2007 22:19 jomac30 wrote:I had a sinus lift and bone graft and until it heals I have to sleep without cpap.
What terrible headaches I wake up with. I'll be glad to get back to cpap in a few weeks. Right now the air pressure would probably blow out my bone graft. I can't even sneeze, blow my nose, or drink through a straw while healing.

And yet on Jan. 2008 you were still at a pressure of 13.

A sinus operation can definitely change your pressure needs, maybe you're being overtreated now. Your average AHIs are definitely too high - and since you manage to spend half your night at a pressure of 6 with no events, I wonder if you're not actually getting too much pressure - which actually causese pressure induced apneas that your machine can't handly properly.

The the AHI at the higher pressures can be extremely misleading because if it's calculated for a very short time period, you get a riduculously high - meaningless number.

Can you have a repeat sleep study, now that your sinuses are healed?

Can you create a PDF file of your charts, and post it in a site like photobucket so we can see them?

No, don't go back to straight 13, I don't think that's what you need. 13 was what you needed before your operation.

O.

I would vote for going back to CPAP, but as ozij mentioned, 13 may be too high.


Den

I had another sleep study, but they wanted to raise my pressure to 18. that's when I asked for an APAP,
I guess I'll see what my sleep doc says next month. Maybe I need another sleep study, but I thought on APAP it wasn't needed.

jomac30 wrote:I don't really understand the reports. Here is what it says (I'll list a few days)
12/2/08
at pressure of 6, 220 minutes,55.8% of night,flow limitation 0,Vs=28.1,non responsive apnea/hypopnea=0,OA=0.0,hypopnea=3.8, AHI=3.8
at pressure of 7 AHI=5.2
pressure of 8 AHI=10.3
pressure of 9 AHI=6.5
pressure of 10 AHI=7.3
pressure of 11 AHI=12.
pressure of 12 AHI=51.4
pressure of 13 AHI=60.0
The report says that night my average AHI =6.7
I don't understand why it says 90% at a pressure of 11. I spent 57 minutes at this pressure and 220 minutes at pressure of 6.
Shouldn't 90% of the night be the 220 minutes??

12/3/08 AVERAGE AHI=6.2
12/4/08 AVERAGE AHI=14.3

What makes the AHI so high? Is it the mask or the pressure of the machine.?
Also I cannot tolerate the humidifier on because the heated air makes me feel suffocated.

My next appointment with the sleep doctor is january 23.

I just noticed THAT line about the HH.
WHAT humidifier setting(s) are you using?
Many people have reported higher AHI by using higher humidifier settings.

From that list, it would appear that your ideal pressure is around "6". Anything above that starts creating problems.

Den