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newbie - yossarian - 08-30-2016
Hello Apnea Board,
First post.
I'm one of you, but I don't really want to be
.I have questions, but these will have wait until I can post some pics.
In the meantime: conversation.
I'm male, 56, Aus. Relooking at my profile, I realise I've lurked in this forum since March. I had a sleep study about a year ago and the specialist said AHI = 26-36.
Not sure why he gave me a range. It's something I would ask him now, having learnt a bit now by reading. But at when you're initially diagnosed there is ignorance and a certain amount of denial.
The following titration study drop my AHI to 8.5 and I was urged to rent a CPAP machine for a trial. To say I was unimpressed with the idea about wearing a mask every night for the rest of my life would be an understatement. I'm sure this is familiar to most of you...
RE: newbie - OpalRose - 08-30-2016
Welcome to Apnea Board yossarian!
After you acquire a few more posts, upload us a screenshot of your data.
http://www.apneaboard.com/wiki/index.php?title=SleepyHead_Chart_Organization
http://www.apneaboard.com/wiki/index.php?title=Attaching_Images_and_Files_on_Apnea_Board
The one thing I see from your profile, is that your machine is set to a wide open range of 4-20.
A minimum pressure of 4 may be too low and could cause you to feel air starved. You may want to raise that to 6.
Your pressure range should be narrowed in order to receive optimal therapy. When you get a few more posts, upload us a screenshot and we can better advise.
RE: newbie - yossarian - 08-30-2016
Thanks Opalrose,
I will update my profile, as I raised it to 5-20 a while back. I was getting clusters of apneas at ~1hr into sleep and the auto pressure reacts after the cluster. There was some improvement, but I'm aware that trying to find improvement an be hard when there is so many things you can potentially change and I seem to have a large night-to-night variation. I had planned to step up to 6-20, but was going to wait to the end of the month. So thanks for the advice! I feel like its the right move.
RE: newbie - trish6hundred - 08-30-2016
Hi yossarian,
WELCOME! to the forum.!
I know CPAP therapy can take some getting used to, but just stick with it, it does get better.
Good luck to you on your CPAP journey.
RE: newbie - yossarian - 08-31-2016
Continuing the conversation... (I apologize: its a long one)
My rental trial of a CPAP machine about a year ago was not a good experience.
My main problem was that I just could not tolerate it.
I had a Phillips Pico Mask, but I had nasal congestion/allergy. It was OK when I started CPAP at night, the pressure seemed to keep my nose "open". But any time I removed the mask, (to have a drink, go to the toilet, or just to scratch my nose) my nose just totally blocked up. And then that was it for the night.
Also air escaped through my mouth, so I had to get a chin strap. I guessed that a full face mask was going to be the next step. I was less than impressed and decided it was all too hard. The treatment seemed to be giving me even poorer quality sleep.
What bugged me most was that it appeared that there was nothing I could do to help my body fix itself. I'm a cyclist and I know how with particular exercise/training the body can adapt/change to an amazing degree. Not the esophagus apparently.
Then I was off to France for the Paris-Brest-Paris ride, where an adaption to poor sleep is an advantage.
Back in OZ, the plan was to treat the nose, to treat the apnea. I went to an ENT specialist who said yes I can help, a septoplasty later I was ready to try again.
The next trial I was more compliant, and my sleep doctor recommended that I buy a machine and continue. Thank goodness I check on-line prices of CPAP machines before the appt. Shunted from the specialist to "trial provider" who also had CPAP machines to sell, I asked him: "I've paid a bit more than $1000 in CPAP rental to you already; and you want to charge me $1000 more that the on-line price for an identical machine? (Less $300 for the latest rental)".
Yep.
So we left that doctors office.
I'd like to say I went out and bought a machine straight away. I didn't. But I have now, 5 months ago. It is the same as I used in the trial: Philips Respironics System One 60 Series Auto (The confusing nomenclature where very different machines are given similar names... does anybody else hate this?)
I found the Apneaboard forum and Sleepyhead site, and after a lot of reading I decided to try a Dreamwear nasal mask. Very different for me, but it's seems to be working.
To cut a long story a bit shorter, my observations:
1. I had to have access to the data (I'm a cyclist)
2. SleepyHead software: brilliant
3. Tongue pressing back of top teeth to stop mouth leaks: worked for me.
4. DW nasal mask: I can drink without having to take it off. big tick.
5. I still have problems with the DW nasal mask leaking when sleeping on my side.
6. First 10 Sleepyhead loads: "You're AHI is 1x.x, which is horrible, go see a doctor".
7. I religiously loaded my data after each day. Seeking trends. AHI going down? I thought so for a while, but then it seemed random. Then I didn't bother with the daily data uploading.
8. I read some Apneaboard posts. Realised that the condition is very variable. Trying to find trends (cyclist). Realise my own night-to-night is very variable. I realise its a long game and patience is key.
9. Close shaving top lip before bed, helps with leaks.
10. Lanolin creme or equivalent for sealing: for me unnecessary.
11. I now find that wearing the mask is a comfort. I started sleeping with an MP3 player to listen to podcasts (cycling podcasts) a while ago and then found that just having the earbuds in could induced sleep. The mask is now similar.
12. Do I feel better? The real question, and a difficult one. I find it hard to objectively feel a difference day-to-day. But after 100 days, I can say I definitely feel more mentally clear compared to a previous fogginess.
13. A more telling observation for me was that after a week I started waking with an erection: every day for 2 weeks straight (unprecedented). It's back to normal now, but more than anything else, that convinced me that "something" was happening.
14. I often have clusters of apneas (mostly CA&H), an hour after sleeping and an hour before waking. I changed the APAP pressure from 4/20 to 5/20.
15. I was not sure about the clusters an hour before waking: was it just tossing & turning? So I bought one of those cheap chinese CMS50D+ oximeters. Sure enough the O2 dipped and the HR rose in response to the apneas, so that convinced me that they were real.
16. After ignoring Sleepyhead for a while, I uploaded some data and was pleasantly surprised to find that I actually had a couple of nights with an AHI below 5. Wooh hooh! what a shock.
17. The trend has continued. There is a wide spread, day to day it appears random (AHI= X +/- 2, but a general long term trend at the moment is the AHI is definitely going down. I can predict that by early October my average should be below 5.
18. I think this is unrelated to any machine setting changes. The body just seems to be adapting. Time & patience.
RE: newbie - Maskup N. Sleepwell - 08-31-2016
You're making progress!
The thing that sticks out is that the range is wide open which is not good. What is your 90% pressure? If you can provide us with your stats we can help :-)
RE: newbie - yossarian - 08-31-2016
Hi maskup,
My 90% pressure is 9 (ave press 6.8) for the last 30 days and 9.5 (ave 7.0) for last 6 months. My APAP setting is 5-20 (with aflex x3 pressure relief), I was going to increase that to 6-20, but will wait until I can put up a screenshot for people to look at.
Is the upper limit important? I assumed not as my pressures never go near there.
Are the min,max settings more than just limiting, the range affects the algorithm?
I'm envious of your numbers: 48 to 1.3. How long did that take?
RE: newbie - OpalRose - 08-31-2016
If your 90% pressure is around 9, then you will eventually need to raise your minimum pressure to 7.
The max setting should be set to 2 to 3cm above the 90% number. Although the max isn't that important, but I think when you narrow that pressure range, you will see better results.
AHI isn't everything, what matters is the breakdown of your AHI, like Obstructives, hypopneas, clear airways, etc. that may also determine how we determine pressure ranges.
You should be able to post a screenshot soon, here is some information to help you do that.
http://www.apneaboard.com/wiki/index.php?title=SleepyHead_Chart_Organization
http://www.apneaboard.com/wiki/index.php?title=Attaching_Images_and_Files_on_Apnea_Board
RE: newbie - Maskup N. Sleepwell - 08-31-2016
(08-31-2016, 05:42 PM)yossarian Wrote: Hi maskup,
My 90% pressure is 9 (ave press 6.8) for the last 30 days and 9.5 (ave 7.0) for last 6 months. My APAP setting is 5-20 (with aflex x3 pressure relief), I was going to increase that to 6-20, but will wait until I can put up a screenshot for people to look at.
Is the upper limit important? I assumed not as my pressures never go near there.
Are the min,max settings more than just limiting, the range affects the algorithm?
OpalRose's suggested settings are right on.
If you can visualize a graph (I really need to dig up my old graphs!) where the pressure is the Y axis and AHI is and the machine pressure is the X Axis, then populate it with, say, a months worth of minute by minute data points, you'll find that an inverse bell curve is formed based on AHI per pressure setting.
At the very bottom of that inverse bell curve is where you'll find your lowest AHI at your 90% pressure. This is your your optimal pressure. From this point your AHI will increase if you lower the pressure, and your AHI will increase if you raise the pressure. The more your machine pressure is from the sweet spot, higher or lower, the higher your AHI will be.
So why not leave it right at the 90% pressure as that is providing the best therapy with the lowest AHI? Well, that's actually where your doc will set a straight CPAP.
So why use an APAP? Well, your 90% pressure will wander a little bit. Its a moving target! Your 90% optimal pressure is different if you are sleeping on your back (higher pressure needed) or on your side (lower pressure needed). Same goes for weight change, alcohol and other depressants, they both cause your optimal 90% pressure to wander. Other factors come into play as well. An APAP compensate for your wandering optimal 90% pressure. If you look at your APAP machine reported 90% number every morning when you wake up, you will see small differences in your 90% number. This is the machine adjusting to your nightly needs.
So what range is best? OpalRose's suggestions are a great place to start.
If you let your machine wander too low, you don't get enough pressure to keep your airway open. No Good.
If you let your machine wander to high, you'll get too much pressure which will either wake you up, or cause you to stop breathing in response to massive air pressure being shoved down your airway. Also, with a pressure too high, it can feed on itself in a recursive loop. Pressure too high > You stop breathing > machine raises pressure in response > you stop breathing more > machine ramps up pressure more. You see where this is going. Finally you wake up. No Good.
So, your APAP can compensate for small changes in your optimal pressure if you give it a pressure range to operate in. BUT, letting it wander too low, or wander too high will negate the benefits of the machine tweaking your optimal pressure.
You need to let it roam in a set range rather than leave it wide open, either at the high end or the low end.
Finding that optimal range takes some trial and error, looking at your data, letting experienced folks on this board look at your data, and making adjustments, then looking at your resulting data and making more tweaks. Eventually you'll get it dialed in optimally to your needs.
I figured it out and sleep like a baby. You can too!
RE: newbie - Maskup N. Sleepwell - 08-31-2016
(08-31-2016, 05:42 PM)yossarian Wrote: I'm envious of your numbers: 48 to 1.3. How long did that take?
You'll get there too, it's a sizable learning curve, just stick with it and learn all you can.
Initially 8 years ago it took me about 4 months to get my APAP AHI down to 1.7 ish. That was all self taught as I was not under a Doc's care.
I started on an Auto BiPAP last year after I was finally officially diagnosed with OSA, and so far have got it down to 1.3 ish. That additional drop took a couple of months and involved an increased number of variables that go along with an Auto BiPAP. The tweaking continues, but really can't complain about where I'm at.