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new to CPAP - Sleeeppp - 10-20-2015

[attachment=1806]I've been on CPAP for about five weeks and I'm getting a bit disillusioned about it all because of poor AHI numbers and insomnia.
(AHI in teens, sleep patchy).
Initially my machine was set at pressure 10 (CPAP), EPR 1,. I tried this for about a week but found my AHI events were still in the teens (sleep studies (2) said I had AHI 20 ( some centrals)).
Then (after playing around with the machine) I found the clinician's menu...
so I adjusted the settings:
Autoset for her
pressure: 10 - 20 (varied over the next few weeks)
EPR: 2

Over this time I noticed the results still weren't that great and I still had disrupted sleep (if I slept at all). I noticed the Sleepyhead program showed the best and worst setting for the period so I changed the machine setting to match the best.

(p 10-20, epr1....) But the AHI was 20!

Not sure what to do now - Tried slow release Melatonin (from GP) but this didn't help much.....

Any suggestions on getting use to the treatment and finding optimum settings?? (I see specialist on 4th Nov)
Huh




RE: new to CPAP - kaiasgram - 10-20-2015

Welcome Sleeeppp -- Do you know how much of that AHI of 20 in your sleep study was actually centrals? It may matter in terms of figuring out how to get your AHI down on the machine -- you might even need a different type of machine. It would be good to see both the diagnostic study and the titration study, and what was the best AHI you got during the titration study (and what were the pressure settings at that point?).

I noticed in the SleepyHead report that it only reports 5 days of data. Were you on a different machine before this? Just wondering why so few days showing since you mentioned using the machine for 5 weeks.

The insomnia is not surprising because your therapy is nowhere near stabilized. So that needs to be the first priority. Do you have data for the previous weeks of machine use? And what is the longest period of time that you've left the pressure settings alone -- it looks like you changed the pressures every day for the past 4 days that we can see in that SH screenshot. The frequent pressure changes may not be helping but I certainly understand why you'd be doing that in an effort to restore your sleep.

While you're waiting for the doc and trying to figure things out (we'll help as best we can in the meantime), keep in mind that centrals are not treated with higher pressure and can actually be made worse with higher pressures.

If you can start filling in some of the missing pieces in my questions -- and others will come along with questions too -- we'll see if we can help you out.


RE: new to CPAP - Sleeeppp - 10-21-2015

thank you for your reply....

I don't have the sleep study information apart from being told my AHI is around 20 (goes up to severe when sleeping on my back which is a third of the time). Im going to ask for the report (s) when i see the specialist.

As for the data prior to 16th October - this has been deleted when I reset it (oops!). Now I have SleepyHead, I've been downloading overnights information and I'm hoping to have enough information for the appointment on 4th Nov.

I'll try yo upload some daily reports (need to figure out how to do this)

Readings;
16th October
mask time 3hrs 4mins
bedtime 23:54;34 wake-up 02:58:35
mode: APap (10-16cmH2O)
AHI: 4.93

Ai= 1.23, HI=1.03, CA=2.67, UAI = 0

16th October (4hrs 52 mins)
mode: APAP 10-16 cmH2O
AHI 10.89
AI=3.70, HI=2-05, CAI= 5.14




RE: new to CPAP - zonk - 10-21-2015

(10-20-2015, 11:00 PM)Sleeeppp Wrote: I've been on CPAP for about five weeks and I'm getting a bit disillusioned about it all because of poor AHI numbers and insomnia.
Hi Sleeeppp
I would not worry about numbers at this stage, you'll need get more sleep but with insomnia is not easy
RobySue (http://www.apneaboard.com/forums/Thread-RobySue-s-Beginner-s-Guide-to-SleepyHead) written a blog deal with insomnia
http://adventures-in-hosehead-land.blogspot.com/





RE: new to CPAP - becker44a - 10-21-2015

(10-21-2015, 12:13 AM)Sleeeppp Wrote: thank you for your reply....

I don't have the sleep study information apart from being told my AHI is around 20 (goes up to severe when sleeping on my back which is a third of the time). Im going to ask for the report (s) when i see the specialist.

As for the data prior to 16th October - this has been deleted when I reset it (oops!). Now I have SleepyHead, I've been downloading overnights information and I'm hoping to have enough information for the appointment on 4th Nov.

I'll try yo upload some daily reports (need to figure out how to do this)

Readings;
16th October
mask time 3hrs 4mins
bedtime 23:54;34 wake-up 02:58:35
mode: APap (10-16cmH2O)
AHI: 4.93

Ai= 1.23, HI=1.03, CA=2.67, UAI = 0

16th October (4hrs 52 mins)
mode: APAP 10-16 cmH2O
AHI 10.89
AI=3.70, HI=2-05, CAI= 5.14

Hi Sleeeppp,
Welcome to the forum.

First, you mentioned that your study identified back-sleeping as a problem for you. I wouldn't skip over this issue. Many patients have worse issues when back-sleeping. You can do simple things to avoid back-sleeping: large pillows wedged behind you, tennis balls on the back of a snug tee-shirt, wearing a backpack. . . Search the forum for these discussions.

That being said, avoiding back-sleeping can only affect the Obstructive events, which aren't a large part of your events. For some patients, there can be "pressure-induced" clear-airway events which gradually subside as you become accustomed to sleeping with your machine. If these events persist, you may have been provided the wrong type of machine. A Clear Airway event occurs when your brain doesn't deliver a timely signal to breathe (sometimes referred to as a Central event). ASV (Auto Servo Ventilator) machines detect this situation and immediately kick in the pressure to stimulate a breath. Normal APAP machines do not have this function. However, you'll have to wait a while to see if your CA events decline.

If you take measures to avoid back-sleeping, the machine's pressure should stay down, and that may help with the CA events (if they are pressure-induced).

Good luck on your journey.



RE: new to CPAP - Sleeeppp - 10-21-2015

Thank you for all the information - much appreciated!


RE: new to CPAP - trish6hundred - 10-21-2015

Hi Sleeeppp,
WELCOME! to the forum.!
CPAP therapy can take some getting used to but don’t give up.
Hang in there for more responses to your post and much success to you on your CPAP journey and getting your machine fine tuned to meet your needs.


RE: new to CPAP - Shastzi - 10-21-2015

What Becker said.
Sometimes you have to nail down one thing at a time to get everything trimmed out.
Take a look at your leaks too and see if they are being a problem.
***
It's not unusual to take 3-4 months to adapt to this new thing.

Hang in there it gets better!

Smile


RE: new to CPAP - wxmcpo - 10-21-2015

Not familiar with your machine, but if you have an auto setting on it you may want to try that. When I first started on bi-pap my doctor put me on a range of 7-15, but my AHI was still in the 20's on a nightly basis. Went back and she put the machine on auto and while I am still in the 6-9 range as far as my nightly AHI it hasn't been in the 20's since and I am rarely in double figures.


RE: new to CPAP - Sleeeppp - 10-21-2015

Thanks thanks!!! :>

I tried the rolled-up sock tied to my back so that I sleep on my side - works a treat! And I changed the settings of my machine to prescription:
- CPAP (only)
- pressure 10
- EPR 1 (no ramp)
... and AHI events went down to around 7 (helped lower centrals)... and I had some sleep.. yay!
I'll leave this setting for a while and focus on lying on my side and sleep (also to get some baseline data)

RE: Insomnia - the article referenced is great and I'm starting a sleep diary today. All the other 'sleep hygiene' stuff I do anyway which is reassuring.

Re: the machine type prescribed - I'm not convinced if APAP is the right approach for me because of my breathing patterns (I tend to have periods of rapid shallow breathing followed by a pause, then I take a deep breath - move around.....). When I see the specialist (4th Nov) - I'll discuss this with her and get a copy of both studies.

Thank you all again - this is a journey and there will be bumps along the way but all worth it