Susan, with the TN and it's trigger point being hit by your mask, what about one like "CPAP PRO Nasal Pillows 'No Mask' Setup Pack" ? It has a mouthpiece that holds it in place and nasal pillows up the nose and doesn't touch anywhere else!
I can sympathize with your TN. I have a variety of neuralgic pains, among which is a "teeth are on fire" sensation that may be a variety of TN. It is awful!
(01-27-2015, 01:29 PM)surferdude2 Wrote: I agree with keeping it where it's at for a while so you can become more comfortable with the pressure. It's obvious that you will eventually need a setting like you had on the 19th but you aren't able to tolerate that level just now. In a few days you'll find that a slow increase of pressure (like .5 cm) will not even be noticed. It takes time and patience to sneak up on the correct setting. You're doing well enough so don't rush things from here forward.
You may like to set the pressure up temporarily and do some 1 hour daytime sessions (week or so) while reading or watching TV. That works for many people to get them accustomed to the pressure they intend to try. I did it that way rather than having to try a new pressure cold turkey on a night time sleep session. The daytime trial runs can take some of the stress and anxiety out of the new pressure and perhaps diminish some of the CAs. I set it as a straight PAP single pressure for those sessions but you can do it in other ways, whatever gets you results.
Very Helpful. I've done some of my "time" awake in the last month, but not at straight pressure or a concerted "far away from bedtime" effort for the most part. I've done a couple sessions where I did some genealogy stuff on my laptop while I had the mask on so that I'd be diverted...but the idea of trying to get used to in one hour sessions sounds wise. I am amazed how good 6.6 feels even though after my night of 8.0 (the 19th) my good numbers didn't translate into good sleep/feeling...so when I tried 6.6 that night it felt bad. Just a week plus later it's great so I'm sure I'll get there.
Sounds like you are doing really well with your CPAP therapy, keep up the good work.
Hi I'm a little puzzled as to why you've restricted your maximum pressure. Your AHI may well come down if you let the APAP look after itself and increase the pressure if it needs to.
01-27-2015, 03:29 PM
(This post was last modified: 01-27-2015, 03:38 PM by TheManseHen.)
Hi Daria and Big ears
DariaVader, Great name. Ouch teeth on fire sounds terrible! You have my condolences. Thanks for the mask recommend, I'll check it out!
Big ears, Good question. I am a newbie so I could be wrong and certainly will be unclear but...as I've had it explained to me, by the wonderful Paula02...Getting control of the apneas/hypopneas etc, is like herding cats. If one has a dozen cats in a big 20 foot room, you go to get one and put it back in the box, and while you are all the way over in the corner getting the first one, another one gets out and so on, there is further time to travel to collect all the kitties, thus control may be an issue.
Now I don't know all the science behind it, but I know that the machine takes some time to go from flat to fluffy, and I know it is somehow programmed (thinking algorithms here) to not run SO fast from flat to fluffy as to wake the sleeping person attached to said machine. Despite that, I had the machine do run aways where it seemed to be chasing after the rare outlier still fast and hard enough pressure wise, to give me terrible fitful sleep wherein I would without totally waking, rip my mask off.
A mask that is off, is less good than one that is on, and perhaps set a tad too narrowly.
I didn't just arbitrarily pick a number, nor would it seem wise to do so.
I studied my charts on ResScan for the period before I tinkered. I looked at my highest and lowest pressures and my average pressures and where my 95th percentile is as well. And then I made hopefully an educated guess.
I wanted to find a range that would be a little narrower, but perhaps less wake inducing, and more physically comfortable. After I get to that, I want to find one that gives me the best AHI. I had one great AHI night at 8-13.6 but 8 was too high too fast for me and I slept like someone being tortured. (had that for years without apnea, no thanks)
I may have lowered my upper limit too low because I'm hitting the limit I have now but instead of hopping right back up to 18.6 or 20.00 (which did not overall give me better numbers) I'm going to take it slow, knowing I can sleep "okay" with what I have it set at, and see where the numbers are two to five days. I am going to raise the pressure by .04 tonight up to 14.00 I'll keep doing so in small increments every two or three minimum, days to see what combo gets me the best AHI/Sleep comfort ratio.
For original smarter better non-newbie thoughts on why not leave it at 4-20 on autoset, see my OP of a few days ago "if i have an autoset why adjust the range" or something like that, and read the great advice I was given by cpap juniors and seniors.
I think what I'm realizing, rightly or wrongly is this...x percent (a massive amount) won't even try c-pap, and if they do, won't stick with it. Muscling through and going for the max if one is not used to it, sounds like a sure fire way to fail/quit/burn out. I'm putting in 9 plus hours a day on c-pap every.single.day. I am determined to succeed, but I want to do that in an "informed consent" evidence based kind of way. I've learned what the old timers seem to be saying is true, the body/brain...takes time to adjust to the air/pressure/humidity/lacktherof/noise/mask/ etc we are throwing at it. It's not a matter of just mentally going for the max and pushing through, though I'm sure some can do so. (there is a mental I'm going to use this therapy trials and adjustments and all for the rest of my life because I have no other choice health wise aspect, that's different) Good sleep isn't just about getting oxygen, it's about being able to sleep while getting oxygen. I've spent probably 15 years learning to sleep without oxygen to my brain and learning to listen to it screaming for help, it's going to take some time in the positive direction too.
Big ears, this could be total goo-goo...but it's what I think I know so far only 32 days in.
(01-27-2015, 02:51 PM)trish6hundred Wrote: Hi TheManseHen,
Sounds like you are doing really well with your CPAP therapy, keep up the good work.
Why thank you kindly Ma'am!
There but for the grace of God go I. I'm thrilled I can even begin to sleep with the changes/mask etc because I am known to myself and loved one's as a "princess and the pea" kinda gal.
When my back went out three years ago and came with nearly unbearable pain and sciatica, I still couldn't sleep on my back and had to sleep on front even though it was nearly impossible to get comfortable (Husband is a bit sensitive to being crowded out with a zillion pillows,
) so the notion that I'd be able to do as well as even I am, in putting in my hours, getting through nights of many wakings, amazes me and I am grateful for small victories.
I also was suffering unbelievably for years before c-pap, the improvement even 32 days in, even with imperfect numbers, short hours at times, trigeminal neuralgia flair up is SO GREAT, i can't imagine going back or giving up, or considering the current state of affairs to be "suffering." That said, I think we all feel tormented/suffering when it's in the middle of a sleep deprived, many wakings struggle with our mask/machine/adjustment. This beats the fatigue, waking headaches, voiding every hour, hands down.
01-27-2015, 04:00 PM
(This post was last modified: 01-27-2015, 04:29 PM by quiescence at last.)
those charts are enlightening, making some of my past comments inadequate. you are doing very well, and hope you see the numbers shift your way tonight. your charts do not seem to suggest you are running into the max on your pressure. I may just be unfamiliar with your machine type. I don't see any of your past nights max out at a pressure remarkably higher than 13.5 (when you had it set wide open). Brief excursions past your 95% pressure were evidently enough to wake you up and then you reset.
pressures great at this time, I echo above advice to creep up min press in increments until just below your median pressure.
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
I realized my charts cut off in the screen shots and tried to post better one's later but it said I'd reached my max of posting size/space. I assume that is a per day thing? Not sure.
I agree with everyone on leaving things be for awhile, just concentrate on keeping your mask leaks low, and a good nights sleep.
Your on the right track!
I've only been at this since mid November myself, there's definitely a lot of fine, helpful ,and supportive folks here!
I still feel like you should make no changes for a day or so. Why? Because your average pressure according to what you posted is 9.8. You do hit your max one in awhile, why? You can only answer that by looking at your detailed graphs, but it is not often enough to send the averages up much. So I think if you set your max to 14, you will hit 14. 15, and you will hit 15.... I do not think these sound like true values. Perhaps they are simply caused by leaving the machine on when you take the mask off? Don't know.
But I do know I feel you should quit making changes for awhile.