Newbie struggling

One other thought. Are you using exhale relief/A-Flex? It is a comfort setting, and you may find it more comfortable to breath with it. Some like it, others don't.

KatieW wrote:One other thought. Are you using exhale relief/A-Flex? It is a comfort setting, and you may find it more comfortable to breath with it. Some like it, others don't.

Thanks for the tip, Katie. My A-Flex setting was at 1 so I moved it up to 3. I do have trouble exhaling at higher pressure. It gets exhausting.

Hope1952 wrote:[ I often have a stopped up nose and the pressure from the mask on my face doesn't help. The congestion sometimes makes me struggle to breathe.

A mask I tried to use, besides causing a pressure sore, blocked my sinuses by pressing on the side of my nose/cheek and I would immediately get congested when I put it on. There was no way I was going to get used to it, and it took me just a few nights to say "next". That's the main reason pillows style masks work best for me. If I had to have a full face one, it would have to be one like the Hybrid for this reason.

Not saying YOU need to change masks. When it's all new and seemingly impossible, it can be hard to know if a mask will in time be workable or if it's time to say "next". I'd hate to see you trade in a mask that doesn't leak, but if EVERY time you put it on you get more congested, you have to wonder. The question becomes if the specific mask causes the increased congestion, or if any mask would, or if it's the humidity level. Best wishes sorting thru things and getting more sleep.

kteague wrote:

Hope1952 wrote:[ I often have a stopped up nose and the pressure from the mask on my face doesn't help. The congestion sometimes makes me struggle to breathe.

A mask I tried to use, besides causing a pressure sore, blocked my sinuses by pressing on the side of my nose/cheek and I would immediately get congested when I put it on. There was no way I was going to get used to it, and it took me just a few nights to say "next". That's the main reason pillows style masks work best for me. If I had to have a full face one, it would have to be one like the Hybrid for this reason.

Not saying YOU need to change masks. When it's all new and seemingly impossible, it can be hard to know if a mask will in time be workable or if it's time to say "next". I'd hate to see you trade in a mask that doesn't leak, but if EVERY time you put it on you get more congested, you have to wonder. The question becomes if the specific mask causes the increased congestion, or if any mask would, or if it's the humidity level. Best wishes sorting thru things and getting more sleep.

Thanks for your input. I'll need to look up "pillow style" and "Hybrid." My mask might feel so workable to me because during my second sleep study the mask they used was horrible. It was so tight, I still had marks on my face 48 hours afterwards. And it was just a nose mask which put awful pressure on my sinuses. I couldn't live with that because after a while when my nose stopped up, that ended the study. Using a nose mask for the study was a valuable lesson for me because I realized that when my nose stopped up with the nose mask, I couldn't breathe through my mouth. (air blew OUT as soon as I opened my mouth) I frequently will breathe through my mouth with my current mask and it's soft, pliable, and reseals easily if I move my face or jaw.

I will keep "mask change" on my list to consider if other changes don't cure my problems. Thank you!

Hi and welcome to the forum!

I "echo" KatieW's comment to try a fixed CPAP setting if the changing pressure distrupts your sleep. You can self-titrate in CPAP mode as well (e.g. start at 7cm, raise by 0.5cm and stay at that setting for ONE full week before bumping up again by 0.5cm the next week). However you need to have the data from your machine so that you're not 'flying blind.' The data will also tell you if you're having leaks (one of your questions).

Even if it turns out you're not able to tolerate a narrow APAP range (try Ozij's suggestion!), one advantage of running in APAP mode is that, WITH the data available (AHIs, leaks), you can find your 90% or 95% pressure with the APAP and then run at fixed CPAP.

You mentioned that your lung hurt at the higher pressure - did you get any sort of pulmonary testing done during your sleep study? Do you have any sort of lung disease?

Good luck, YOU can make it work even if your doctor isn't interested. And on that note, I would try to find a doctor that's interested in YOU and YOUR HEALTH!

Hi Newbie, I'm one too, going on my fourth week...
we have the same machine and I just heard that a lot of them are defective. The humidifier is not working properly. My DME told me that they've had to replace them for a number of clients already, and they came onto the market in early March. Mine keeps waking me up. I was told I have to go to the DME to exchange it, a 50 minute drive which I have little time for right now. However, we have to figure out what works for us because if we don't, the consequences are far worse. It sounds to me that you've not gotten good support from the people you need it from. I've found it to be the same and I believe it's the exception rather than the rule, when things go the way they should. If they don't, we need to advocate for ourselves and ask to get what we need. This is not an easy thing, although compared to many illnesses one can get, this isn't so bad. I keep trying to remind myself of this when I'm frustrated by the equipment, my red and puffy eyes, and as it soaks in that I must do this. The desire to gain back some of our health which has been diminished because of sleep apnea must be nurtured and I encourage you to keep truckin', keep looking for solutions that work for you. Find out if it's the machine that's bad. It might very well be. I'm trying to figure that out myself. Mine makes loud sounds, wakes me up just as it's stopping. I started with my pressure on 4, to rise to 12 within 20 minutes. That did not work at all. Too little pressure to start... so I bumped it up to begin at 7 and that works just fine. You should be able to change that yourself, as I did. If there's not enough pressure to start you work too hard to get oxygen and that could be causing the burping. I had the same feeling, but don't anymore, now that the pressure is right. My nostrils have gotten very sore and I think I have to bite the bullet and go to the DME to switch machines. Please keep in mind what I've been told about these particular machines. It's hard to figure it out when you're new to the cpap world and then you have to figure out if it's a matter of getting acquainted or if there's something wrong with the equipment! Either way, you need someone to help you figure it out. If there's someone else to work with, find them! if not, keep asking questions on this site, it has helped me when all others couldn't. Feel free to email me. good luck, Lisa (sleeplover)

sleep lover wrote:Hi Newbie, I'm one too, going on my fourth week...
we have the same machine and I just heard that a lot of them are defective. The humidifier is not working properly.
I started with my pressure on 4, to rise to 12 within 20 minutes. That did not work at all. Too little pressure to start... so I bumped it up to begin at 7 and that works just fine.
you need someone to help you figure it out. keep asking questions on this site, it has helped me when all others couldn't. Feel free to email me. good luck, Lisa (sleeplover)

Thanks for your encouragement and helpful insights, Lisa. I have often wondered if my machine wasn't working properly and I wondered why the doctor never considered that possibility. It's a complicated machine and now that, thanks to my new group of friends here, I'm able to start tweaking it for myself, I'm going to assume that the problem is NOT with the machine, but with the settings, perhaps my mask, perhaps other obstacles that I can fix. I love what my machine might be capable of IF I can figure out the best settings for me and get the software for it.

Yesterday I changed the cpap to apap, lowered the pressure from 11 to 7-9, (7 was my titration number, I'm not convinced that was accurate but it felt like a comfortable place to start) so I stopped swallowing air with the lower numbers. (a HUGE improvement) I took away the ramp because I didn't need it on a 7, and changed the Flex C 1 to the Flex A at level 2. My lungs felt SO much better! I had no idea what that setting was for, no one had explained it to me, and they kept both manuals when I was given the machine. I think that's criminal.

I read for an hour before bed with the room humidifier running on high because my nose felt dry and it hurt. (and I left it running on low afterwards to help drown out some breathing noise) Then I took HALF of the sleeping pill prescribed by my doctor. I don't like the idea of being drugged when I have apnea, but am trying to at least demonstrate that I'm trying to cooperate. My husband thinks the cpap would keep me breathing or at least wake me to breathe. I slept for 3 1/2 hours while wearing the machine last night! That's huge progress for me. I am so happy!
I don't know what the problem might be with the humidifier, do you? I have no experience to judge if something is not working with it. I'll have to pay more attention. Thanks for the heads up.
Jane

KatieW wrote:One other thought. Are you using exhale relief/A-Flex? It is a comfort setting, and you may find it more comfortable to breath with it. Some like it, others don't.

Katie,
Thank you so much for the tip on exhale relief. I changed my machine to A Flex level 2 and had almost no lung pain and so much less effort breathing! I slept 3 1/2 hours on my machine last night. I'm making progress. Yay!

echo wrote:Hi and welcome to the forum!

I "echo" KatieW's comment to try a fixed CPAP setting if the changing pressure distrupts your sleep. You can self-titrate in CPAP mode as well (e.g. start at 7cm, raise by 0.5cm and stay at that setting for ONE full week before bumping up again by 0.5cm the next week). However you need to have the data from your machine so that you're not 'flying blind.' The data will also tell you if you're having leaks (one of your questions).

Even if it turns out you're not able to tolerate a narrow APAP range (try Ozij's suggestion!), one advantage of running in APAP mode is that, WITH the data available (AHIs, leaks), you can find your 90% or 95% pressure with the APAP and then run at fixed CPAP.

You mentioned that your lung hurt at the higher pressure - did you get any sort of pulmonary testing done during your sleep study? Do you have any sort of lung disease?

Good luck, YOU can make it work even if your doctor isn't interested. And on that note, I would try to find a doctor that's interested in YOU and YOUR HEALTH!

Thanks for the helpful info and suggestions. I have "try fixed cpap setting" on my list of things to try if apap doesn't work. I can't get the data yet as my machine is new and I'm trying to figure out where I might find it online. My lungs didn't hurt last night after I changed the Flex setting and I actually felt like I got some good sleep for a short time.

sleep lover wrote: If they don't, we need to advocate for ourselves and ask to get what we need. This is not an easy thing, although compared to many illnesses one can get, this isn't so bad.

Yes, absolutely. I really appreciated your encouraging post, sleep lover. From the heart of one newbie to another.

Welcome to the forum.

I'm a struggling newbie too. I have no answers, just questions. I just wanted you to know your not alone. I just found this site and have been reading and reading. Very nice people. I'm still trying to figure out the c-pap jargan and how to work this site.
Good Luck to both of us.

Welcome to the forum jazzer4! If you have specific (or not so specific!) questions, feel free to start a new thread and ask away! There's no stupid question, just the ones that aren't asked! Also if you haven't figure it out yet, the "search" area at the top is very useful, as is the CPAP Wiki. Good luck!

I wish you well on your journey. I am very new to this whole thing myself. I commend you for your courage to stand up and get the care you need. Because of your steadfast determination to make this work i am sure you will find that winning combo. I hope it is soon. I am cheering for you. I am working on some of my own issues. I do feel I am benefitting from the treatment but not as much as i could be. So I have my own trials.
the support here is awesome. you have definitely come to the right place.

After 2 unsuccessful months of battling every night with my machine, (and not "sleeping" for more than one hour with it most nights) I actually slept for 7 1/2 hours straight using my my apap last night. I'm so excited! Thank you to everyone who has encouraged me when I felt like giving up and to all those who have shared such helpful information and suggestions whether directly or indirectly on this website.

Yay! Way to go Hope!!!! Wishing you many more successful and sleep-full nights!