Newb to CPAP - any tips to help get used to it?

[fmgk]

hello all,

I'm new to this CPAP malarky and struggling a little. I've been doing my reading, but I find it quite overwhelming, so much information , so many terms, phrases, types of equipment. I'm a little lost.

I'll be honest, I wasn't taking this too seriously until recently, when my doctor described it as if "someone came into my room as I slept and choked me, every minute for the whole night". And that I would likely have a heart attack in 5 years.

So now I am taking this seriously! I will try anything and everything to make this machine work for me. But i'm having more than one issue with it. The main being - I find that I always wake up with a sense of urgency JUST as I'm about to fall asleep. My heart is racing, and i'm hyper awake (not panicked though, which is good). And then its hard to get back into a sleepy state of mind to try again. I also find I'm hyper aware of my breathing. To the extent that I feel like i'm "breathing on manual". If i stop thinking about it, i feel like there's an unnatural pause in my breath. That said, I have managed to take a few short naps successfully with it on - each around 45 mins. So it can be done! But at night I just can't get it to work for me. Asside from the breathing issues I have some irritations from the way the mask pushes at my jaw, i feel like I'm clenching my teeth, and they get sore pretty quick. And laslty I find the noise of the mask (the exhaust) to be hugely distracting. I tried putting in earphones with some music, but then the masks pushes against them, making my ears sore. I'm feeling frustrated and I don't know where to begin figuring this all out. For reference, my pressure is set to 12, but should be at 14 (they lowered it to help me get used to the machine) and I have an AHI of 56. I think. 56 "incidents per hour" anyway, not sure if that is what AHI is. So apparantly this is pretty severe so i NEED to do something. I can't just say "oh the cpap machine isn't for me"

Anyway sorry for the wall o' text and thanks for reading!
-Kieran

[buntin]

Hi I know it is hard at first as we are not used to having this mask on our face but it will take time for you to get used to it,I have a drawer full of masks and have tried everything to get used to it. please dont give up as it does get better, I have been on cpap for 3 yrs now and it is just normal now .I have my machine in a drawer so do try differant things to make it better, you can do it.

[Lizistired]

Welcome to the forum. Please go to the user control panel and list your equipment in your signature IN TEXT format. We really need to know what type of equipment you are using. Also give us some details on you machine settings, PRESSURE, RAMP, EPR or FLEX, CPAP or AUTO...

[2 B Sleeping Soundly]

fmgk,

Hang in there you can overcome these issues and get to successful treatment of your OSA! To avoid being overwhelmed, give yourself a break and allow the time necessary to learn, experience, and adapt to this new and foreign world of sleeping with a machine, mask, and hose. We all have gone through (or are still going through) the same process. You can do it!

Try taking it one step at a time in dealing with each issue that you are having. Start with the most important one first and work from there. If you are not sure which one you should address first, ask the very knowledgeable people here, they will help you. Remember, you don't have to solve the puzzle of PAP therapy all at once, only one piece at a time. It is a journey, not a sprint. In time it will become the best thing for your health and well being that you have ever done!

Welcome to the forum,

John

[nanwilson]

If you pracice wearing your mask and machine while waching tv or reading a book would get you used to it while awake. Panic is normal, you now have a mask strapped to your face and its blowing air into you........its going to take time and effort to let your brain know that YOU are the boss and this therapy IS going to work no matter how much your brain hates it. As one of the ops said, the mask is sometimes a deal breaker, I went through 10 or 12 of them before I found the one that works best. Remember....persistance and patience, and you will get there in no time. Kieran, you WILL be successful, you have started with the right attitude.....and WELCOME to the land of hoseheads .
Cheers
Nan

[Gerryk]

You said you have taken a nap wearing the mask. A successful sleep for 45 minutes.

So what woke you up was it an alarm clock, someone else or did you just wake up.

Where did you take the nap? Was it in your bed where you are trying to sleep at night or in an easy chair?

What did you do when you took the nap? Did you just put it on and fall alseep, watch tv, read a book?

Without going nuts and writing things down minute by minute figure out what you did when you took those naps with the mask on and try and do the same thing when you are going to sleep at night.


Many many things to remember or not do before bed. Do not eat, no caffein or sugar, don't exercise or get worked up. Just relax and don't always wait until you are in bed to relax. Thier are other things to not do and I hope others mention them because that's all I can think of off the top of my head right now.


You do want to have things close by that you may need through the night that you use regularly. A flashlight, extra blanket or a glass of water. Anything you would normally need that you would have to get out of bed for keep it close by so you don't have to disrupt your going to sleep. Do not drink a lot of water, usually a sip is more than enough.

More to come from others.

Gerry

[fmgk]

Guys. Seriously. You are all awesome, such a heartfelt response so quickly! It really makes a difference knowing there are people who I can turn to for help, and whatsmore, experts in the area. My doctor, while lovely, does just send me on my way and isn't hugely available to discuss feedback, and although my friends are very supportive and understanding, they do not understand the idea of accepting you must wear this bizarre wind tunnel on your face every night for the foreseeable future

Anyway, I can't quite figure out how to edit my signature so it shows up like you guys have it - but i'll play with that later. For now:

Machine: F&P Icon Premo, built in humidifier. This is CPAP machine (not Bpap or auto)
Mask: F&P Zest plus with headgear
Pressure 12 CMH2O (down from 14)
Rampup: 30 mins
I do not know what EPR or FLEX refer to...

average leak is 47l/m (0% excessive leak according to the readout) so I think the mask is at least secure.
The infamous nap: I set my alarm for 90 mins but woke up about 15 mins before it with that similar jump in heart rate. Not panic just...suddenly wide awake and aware! And most importantly impossible to go back to sleep...
I napped on my bed lying as i do when trying to sleep, only difference was clothes and bed covers.
The main difference was that I was SUPER tired when I took the nap. So the distractions were not as much of a problem. I had slept awfully the night before, worked all day and had to go out again, so i figured a nap would be a good idea, and perfect chance to try the machine once more. It was a great nap btw! I saw it as a preview of what the machine can do for me
I think the other issue is for a nap, if it doesn't work, no big deal. But I feel a lot of mental pressure to sleep at night, which of course is counter productive. I will keep in mind about not eating or drinking before sleeping though, as I'm a bit of a pre-sleep snacker.

Things that DO encourage me: I actually slept the whole night more or less when i used the machine in the hospital after the sleep study. But it was an auto or bpap and I don't want to give up on CPAP so easily.
The pressure initially was terrifying BUT since securing the mask better and lowering the pressure I actually find the pressure to be quite comfortable. Even when i wake up and its on full whack.

I'll try again tonight and keep you guys updated, I'm more optimistic just from hearing from you all!

[Pugsy]

Your equipment information shows up in your signature line but most of us have it in our profile and we don't always look in the signature line. See where mine is at the bottom of my post here.

To get to the area where we add our equipment to our profile see this link. You actually created more work for yourself putting the links in your signature.
wiki/index.php/Registering_Equipment_in_User_Profile

[jen4700]

I'm pretty new (1 week) but I would guess you might be falling asleep right when your ramp kicks into full pressure. I turned the ramp off on the third night. Practice is a good suggestion. Watch tv or something - at full pressure- then you won't "think" about it so much. Then don't use ramp.

Welcome to the forum and good luck!!

[Julie]

Hi - EPR and C- or A-flex refer to a feature on your machine (depending which one you have) that make exhaling easier if you have trouble doing - not all of us do - so read your manual to learn how to set those if you need them... A-flex is a bit 'more' than c-flex, an all around sort of smoothening out of your breathing, but again, not everyone needs it at all...

[chunkyfrog]

Icon Premo does not have exhale relief.
It is a comfort feature enabling easier exhale; especially for beginners.
Many folks here turn it off once they get used to the pressure.
Know that you are not alone. Keep trying--the REST of your life awaits.

[locust78]

As more and more friends and family of mine seem to be getting diagnosed with OSA, I tell them what someone told me early on: Patience is key. There are so many ins & outs to the CPAP experience, it can be a little overwhelming. Just having to do something as natural as breathing under such foreign circumstances (with a machine strapped to your face), can be stressful. It took me at least six months before I could get through the whole night. During that time, there was a lot of experimenting while I worked out all the kinks. Eventually it did get better, as it will with you. Once you hit your stride, you're body will begin to recognize that the CPAP machine is actually a friend, and episodes of anxiety will fade away. Resources like this board have a lot to offer. Besides advice and info, it's nice to know you're not alone in what you're going through.

[Drowsy Dancer]

The infamous nap: I set my alarm for 90 mins but woke up about 15 mins before it with that similar jump in heart rate. Not panic just...suddenly wide awake and aware! And most importantly impossible to go back to sleep...

Here's a thought, since you indicate that you have the SleepyHead software. When you look at the data from that nap, by any chance did you have an "event" that woke you up?

When I was adapting to CPAP I used to get a lot of "centrals" just as I was falling asleep and which would wake me back up. Very annoying.

Using ramp feature did not help.

After I got used to CPAP this pattern went away.

[fmgk]

Thanks to Pugsy for the help on my equipment list.

Upon the advice of trying to re-create the nap - I tried a dramatic approach, instead of trying so hard to fall asleep, I tried to stay AWAKE as long as I could. I lay watching netflix on my phone, mask and machine on, desperately trying to stay awake and sure enough, i just fell asleep eventually. So yes, I did stay up until 3am but I slept 2 hours with the machine on! Tired again today from being up so late, but totally worth it, and I can just sneak another nap in to fix that. Things are looking up
Next step is trying to get out of the habit of just clawing it off my face when I wake up in the middle of the night. Need to learn to reset and start over.
I had a quick look at the data and the closest event to my waking was 12 minutes, so I don't _think_ that's it. But I'm still getting familiar with the data the software shows me

One last thing to ask you guys though - Could someone explain how leak is measured? And at which point one has too much leak? Basically, every time I complain about any difficulties, my doc says its probably leak, but does not check the data to be sure. From what I understand, one checks the manual for the mask you have and it tells you the expected exhaust - in my case 37l/m. For the 2 naps the data on my leaks is:
Name,Min,Med,95%,Max
Leaks,0,0,1,2 W-Avg: .41l/min
Total Leaks,28,44,48,49 W-Avg: 43l/min

Leaks,0,0,3,3 W-Avg: .25l/min
Total Leaks,28,47,50,50 W-Avg: 42l/min



Last night however , although partially successful, I realized I did not have the hose connected properly to the machine, so it was leaking at THAT end. (I had earplugs in for the noise, so I didn't hear it till I woke up). So the leak average has now presumably gone up in comparison to other nights. But the pressure has remained constant (aside from events) throughout, so I guess the machine compensated? I'm worried the doc will see this now outrageous leak and insist on new masks, when I'm happy with this one, and have not the money for new ones (unless I really do need them of course). Will it stand out as being a "different" type of leak in the data?
Last nights leak data is
Name,Min,Med,95%,Max
Leaks,0,0,6,10 W-Avg: 1.1l/m
Total Leaks,28,48,54,58 W-Avg: 47.11
I can provide more data if needed, I didn't know where to start so I guessed at this. I'm using sleepyhead.


And to some techy questions - what is the difference between the figures for leak, total leaks and Excessive leak.

And as always - thank you all!

[Pugsy]

I think that the F & P leak allowance before the machines throws up its little hands and cried "I quit" is somewhere near 100 L/min. I had a friend using one of their machines and he sent me literature that I read but didn't save and it was a really generous leak allowance before large leak territory is breached.
Certainly well above what you are seeing reported. You are just barely above the expected vent rate and that is always a good thing.

Though sometimes a minor leak can disturb sleep though...so it can't be totally ruled out as a disruptive factor. Kind of hard to know for sure though...you wake up and just know you woke up..and not why.
Me? I sleep through huge leaks sometimes.