Welcome to the forum Carol...this is a great place for info and support. We feel your pain..lol!
Welcome to the forum!
I have found do much help & understanding here & you will too.
Hopefully you will begin to feel more comfortable about your numbers & that tuning in on your best settings/prescription will help.
I need to use a full face mask & I have been finding myself on my side more but mask leak is still minimal.
During the trial it would leak a lot.
My prescription is 8 but I think they will set it a bit higher but I have seen any member make any remarks like "Wow! look how hi her pressure is"
I think everyone is past that stage or never had it.
No finger pointing or making your self feel better by making someone feel worse.
Just good kind & informative words & jesters.
Thank you everyone for your kind words of support. It is so helpful to feel I am not alone as I navigate through this new way of sleeping. I actually decided I was not going to mess with the equipment one night over the weekend. It was horrible - kept getting up to go to the bathroom every hour, tossed and turned. And the next day, I felt exausted and took 3 naps during the day. Luckily it was Sunday. (although I have been known to fall asleep sitting up at my desk at work - ugh hope those days are passed).
My diagnosis was that my pressure needed to be 27. Even on the variable - VPAP I am averaging 22 over my first 17 days with it. So I still find it hard to believe how I functioned at all in my before-PAP life.
So I suppose I have been converted and am now a believer, thanks to the people on these boards, and the fact that I feel so much better!
Glad you are here and on the right track! I recently switched from an old machine that just delivered constant pressure at a very old prescription level to a new Auto PAP and found out what my pressure really is now! WOW! LOL! I feel your pain! But, I feel better for having done this! As you said, no more falling asleep at me desk! How I never got busted is a wonder! However, if I feel sleepy at work now (yes, it does happen from time to time) it is manageable and I just get up, stretch, walk around a bit, get some water and I am good to go! I hope you have the same experience!
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.
PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
09-12-2012, 09:51 AM
(This post was last modified: 09-12-2012, 09:52 AM by NIck.)
Hi Carol. I'm new here too. Also in the same category as you. I was waking up 124 times an hour. I knew there was a problem, but didn't understand how severe it was until I almost lost my job. I've been on VPAP for 9 months now.
My pressure was initially set very high—I think the same as yours, although I don't remember the exact numbers. I couldn't live with that level of pressure. First, on nasal pillow, I got extreme sinus issues. They switched me to a full face mask and lowered the pressure a little, that solved the sinus issues but the mask would start leaking after I got to sleep, so loudly it would wake me up. I'd readjust, go back to sleep, and be woken again in 30–45 minutes or so. I know, theoretically, that being woken up 10 times a night is better than 124 times an hour, but it was torture nonetheless. They lowered the pressure bit by bit. After a second sleep study they said I had nervous leg syndrome as well as apnea, and put me on medication for that and lowered the pressure to 17/12. That seemed a huge releif at first, but the leaking has been a sporadic problem ever since. I'm now on my 3rd full face mask, each a different style. I've come to believe there's something about my facial structure that just doesn't match the norms they use to design the masks.
Last night I got up in desperation at 1AM, went on-line, found this website, learned how to adjust the pressure myself, and lowered it to 15/11. After that I had a heavenly night's sleep (or what was left of it). We'll see what happens. Sorry this is so long. Maybe I should have started my own thread. But I responded to the similarity between my original condition and yours. . .
When i was on the full face mask and struggling with constant tinkering to get it not to leak, I heard about a product called Rems-ese (or something close to that spelling) that got wonderful reviews on Amazon and folks swore that it helped with full face mask leaks.
Well, I ordered and when it arrived, I could not believe what I saw. It looked like someone had taken my Dad's old worn-thin undershirts, and cut them into small triangles with a hole in the middle. The material is very very thin which I think helps it mold to the face. I received a stack of 30 or so of them. Lo and behold- they honestly helped! Somehow, they provided just enough filler to plug up some of the leaky areas.
I saw a story somewhere that they were invented by an engineer whose wife was a full face mask user. She liked to wear face cream to bed, but that made it hard for the mask to fit tight and not leak. The engineer got tired of the sound of the leaky mask keeping him up, and of her complaints about not being able to wear her face cream. So he did indeed cut up a t-shirt and make the pads for her.
If you are still having problems you may want to give the Rems-ese a try... or cut up an old threadbare t-shirt :-)
09-16-2012, 11:35 PM
(This post was last modified: 09-16-2012, 11:42 PM by vsheline.)
(09-01-2012, 03:33 PM)sharkcity Wrote: I have my apneas down to 1.3 but when my breathing stops it doesn't start back up until I wake up feeling like tortured death.
You may need an Adaptive Servo Ventilator (ASV) class machine, which works on the principle of maintaining a desired amount of tidal volume (air flow in/out of lungs), rather than BiPAP pressure alone.
With such a low AHI, the medical community and insurance community may at first deny coverage, saying your great AHI shows there is no problem at all with your present therapy - it is working. But do not accept this.
Keep looking for a doctor who will save your health and life by determining what is the problem and what is the solution, and will go to bat for you for insurance coverage.
If your doctor says an ASV class machine may be what you need but your insurance denies your appeal and continues to refuse coverage, you may need to buy the machine out-of-pocket, if you have any way to manage that. Do not let the medical insurance bureaucracy kill you.
Good luck, and take good care.
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. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(08-31-2012, 06:17 PM)carol1944 Wrote: Hi all-
Another new user here with the usual confusion and need for advice.
I have been on Bipap, now Vpap for a little over a month after being diagnosed with extremely severe apnea. (Don't know how I functioned before- it didn't seem THAT bad).
My occasions per hour were over 100 - i cannot even bring myself to type what the actual number is. My prescription was for 27/22 and most machines only go up to 25.
I am taking this seriously and have been compliant, but it does not stop me from feeling like a freak because my numbers are so high.
I use an auto CPAP with pressures from 10-17 (was 18). That seemed pretty high to me. My husband also has sleep apnea and uses a CPAP with his pressure at 9cmH20. His sleep tests showed that he was having about 55-60 apnea episodes per hour (or one per minute). Mine didn't show as many apnea episodes but more hypopneas (really shallow breathing).
I always saw him as the one with the really bad apnea, and I went through a period where I wondered, if my top pressure is twice his, does this mean my sleep disorder is worse? And the answer is no. It just means that his throat architecture only requires a pressure of 9 to help him breathe normally. My throat architecture requires more pressure. He can also swallow about four times as much as I can. :-)
Soferet [so- FEHR- et; Hebrew; feminine] noun: writer, author
"I love sleep. My life has the tendency to fall apart when I'm awake, you know?"
Welcome to the high pressure zone. I'm on bi-pap with 21 ipap 15 epap.
Hi Carol, Welcome to a great community! I have learned quite a bit in the short time I joined. (love your avatar!)
I believe I read a thread where it was suggested to raise the head area of the bed as an aid to the gravity issue. I have an electric bed for other reasons but do occasionally lift the head for better sleep though I prefer it down. I don't know if anyone here has tried that, if so maybe they can advise if it worked for them. I'm for anything safe that may help and hopefully your numbers will start coming down with good therapy. It does take trying different methods but the good news is you landed at a place where there are plenty of people who may have been where you are now and will continue to help you to be as comfortable as possible for a good nights sleep and affective therapy!
Finger Lakes Region, NY