Frustrated - Lost

[alpha]

Thank you, and you're right, I remember now. I was told to use ramp at first and it was easier than without it judging by the other night's experience. 7 seems like a pretty high pressure to me though... at least it feels like it. What makes it hard is to breathe against it consciously. At lower pressure I can breathe through the hose better as there's not nearly as much resistance, then one my breathing normalizes and I fall asleep, I got the full pressure. That's probably why it was so hard to fall asleep the other night.

That sorta sounds like C-Flex is not enabled on your machine. I like a setting of "2".

Den

How can I tell if it is? There is a C-flex sticker on it. Is it something I can enable myself?

Edit:
Nevermind, I saw the instructions posted earlier. What does CFlex do though? And which setting should it be operating at?

[giantred]

I can totally relate to you. I also use the Auto - C flex with the comfort classic mask, but it's giving me some serious neck problems. This apnea is controlling my life and bringing my business down along with it. I was running a very successful business the last few years but because of these apnea problems I think it might be coming to an end, it's like a domino effect. Not fair. Be very careful, right now the apnea is controlling me instead of me controlling it. It's very discouraging, people that don't have it, don't understand and it's very very frustrating and again not fair. Also, you might want to look into surgery as a last resort. That's where I am at. I'm getting the nasal, sinuses surgery next month. I hope it helps. The doctor said it might not, but it's a start.

[Wulfman]

Thank you, and you're right, I remember now. I was told to use ramp at first and it was easier than without it judging by the other night's experience. 7 seems like a pretty high pressure to me though... at least it feels like it. What makes it hard is to breathe against it consciously. At lower pressure I can breathe through the hose better as there's not nearly as much resistance, then one my breathing normalizes and I fall asleep, I got the full pressure. That's probably why it was so hard to fall asleep the other night.

That sorta sounds like C-Flex is not enabled on your machine. I like a setting of "2".

Den

How can I tell if it is? There is a C-flex sticker on it. Is it something I can enable myself?

Edit:
Nevermind, I saw the instructions posted earlier. What does CFlex do though? And which setting should it be operating at?

C-Flex is exhale relief. The pressure drops momentarily as you start to exhale. I've always used a setting of "2".....it feels more like natural breathing.

Den

[goose]

Hokay.....everyone else has seemingly addressed the machine, which is a good one!!!!
Let me address the mask -- it's truly the holy grail of the xPAP treatment. It's where the "rubber meets the face", as it were......

You were provided (or bought) a ComfortGel mask. What size?? Does it fit your face?? Is it leaking?? Badly our just barely. How tight have you got it cranked down??
Let me address each briefly -- size matters!!!!!!
When I first started xPAP I was provided a CG mask size medium. It was a pain, but I made it work for me. It leaked a lot, I had it cranked down too tight -- I switched to a different mask (which I realllllllly like - more on that later). Come to find out, I really needed a size small. The small fixed 90% of all the problems I had with the mask. It still leaks, but not as readily or as much - mainly eye leaks which I fix by pushing in on the silicone membrane around where the leak is so that it will re-seal. I also pull the mask away from my face momentarily to allow it to reseal -- I have the additional problem of a mustache, so there are some issues with that. The big clue for me was that my teeth hurt in the morning. The mask was too long and pressed in on my uppers -- the small still does a little but hardly at all in comparison.....
If it's leaking our natural tendency is to crank it down tighter. Wrong direction with the CG mask. That silicone membrane outside has to have room to inflate as that is what will seal around your face. The blue thingie is for shape and you can boil shape it if you need to (I never had to do that). The instructions on how to do that are in the mask paperwork (google on the mask -- you'll find it). So the big secret that I had to learn was leave it loose. The headgear essentially just keeps it in place - you only need to tighten it so that the silicone seals.
Also a clean face and a clean membrane can be an issue. If you have oily skin, wash nightly prior to masking up (I don't have that problem thankfully) also if you have oily skin you should probably clean the membrane (at minimum) each day. I put mine in a solution of 1 drop liquid dish soap (brand is whatever we have), about 1/2 to 3/4 cup of vinegar and about 2-3 cups of water. I soak it for about 2 hours, rinse and let it dry. I clean it about every 4 times I use it.
So -- loose and clean....

The ComfortGel is a pretty good mask IMO!!!!! It works well for me, but has been relegated to "backup". I found the AEIOMed Headrest (Aura, or whatever they're calling it this week) which is a nasal pillow mask. I don't mouth breathe so a pillow mask is perfect (as is the nasal interface of the CG). Again -- size matters!!! I was using the Large cannulas for a long time and was having leaks and sore nares etc. and found that the XL cannulas work great, so just another example. When you're dealing with a mask, size can make all the difference in the world.

It sounds like your insurance sucks -- big time!!! You might want to find out from your insurance company how they cover durable medical equipment and consumable supplies. Filters, Hoses, mask interfaces, masks.....etc.
It may be that every 3 or 6 months you are eligible for a new mask. Some DME's have a try it on policy or a 30 day return policy. If you try it on, lay down!! Don't try it sitting or standing unless that's the way you sleep naturally. If you can try it for 30 days or less and return it for another size or type, take advantage of that policy!!! Try as many masks as you can.

I even have a full face mask in my collection for those nights when my nose is so plugged up it's pointless -- I've used it maybe 3 or 4 times in the year and a half I've been on the hose (it leaks badly because of the beard, but it's better than no mask at all!!!!!). In summer I use heated humidity at level 2 on my HH. During winter I use passover (which REALLY helps with rainout).....
If you don't have one, you may want to pick up a "Neti Pot" (google on it) at the drug store and use it -- especially on those nights where you feel like congestion will be an issue.

I guess that's all the "wisdom" (if it can be called that) I can impart at the moment -- I just noticed everyone was focusing in on the machine......To me, a blower, is a blower, is a blower -- it's the mask that makes the treatment happen. You are fortunate in that you have a good blower that can provide you data -- get that card reader and software and start learning how to read the reports!!!!

I'm totally happy for you in that you're giving it another try -- it's very important to your health!!!!
Good luck
cheers
goose

[Edit to add: 7cm seems awfully low. I was titrated at 5, can't breathe until it gets to at least 7 and my APAP is set to a range of 11-15. If you feel like you're gasping for air, up the pressure, but once you get the software and reader, watch the reports -- they'll tell you if you need to go higher (higher is not necessarily better). I'd maybe even go to 10 -- only because that seems to be the "go-to" pressure for a lot of people. Then work from there - just an additional $.02.....]

[preemiern]

Alpha--check your pm's!!
Cindy

[wordlife15]

Hi Alpha. Sorry to hear you're having trouble with your therapy. I haven't read all of the replies to your post so my advice may be redundant. It's great that you're taking control of this. It's the type of thing where you need to be active and conscientious in your approach in order to see improvements. There are no silver bullets with CPAP. It's up to each individual to see what works for them. It sounds like you do need a full face mask. I had the exact same problem as you with the stuffy nose (and also with mouth breathing). I've tried the mirage ultra and the mirage quattro and I find the quattro to be the best due to it being less bulky. My therapy improved vastly after I switched from a comfort gel. I also started using melatonin recently (1 mg before bed) and really helps me relax and not feel so anxious about wearing the mask. Also make you sure you get some exercise each day and avoid sugary foods and caffeine drinks close to bedtime. Good sleep hygiene goes hand in hand with good CPAP therapy. Let us know how you get along. Peace.

[alpha]

Hokay.....everyone else has seemingly addressed the machine, which is a good one!!!!
Let me address the mask -- it's truly the holy grail of the xPAP treatment. It's where the "rubber meets the face", as it were......

You were provided (or bought) a ComfortGel mask. What size?? Does it fit your face?? Is it leaking?? Badly our just barely. How tight have you got it cranked down??
Let me address each briefly -- size matters!!!!!!
When I first started xPAP I was provided a CG mask size medium. It was a pain, but I made it work for me. It leaked a lot, I had it cranked down too tight -- I switched to a different mask (which I realllllllly like - more on that later). Come to find out, I really needed a size small. The small fixed 90% of all the problems I had with the mask. It still leaks, but not as readily or as much - mainly eye leaks which I fix by pushing in on the silicone membrane around where the leak is so that it will re-seal. I also pull the mask away from my face momentarily to allow it to reseal -- I have the additional problem of a mustache, so there are some issues with that. The big clue for me was that my teeth hurt in the morning. The mask was too long and pressed in on my uppers -- the small still does a little but hardly at all in comparison.....
If it's leaking our natural tendency is to crank it down tighter. Wrong direction with the CG mask. That silicone membrane outside has to have room to inflate as that is what will seal around your face. The blue thingie is for shape and you can boil shape it if you need to (I never had to do that). The instructions on how to do that are in the mask paperwork (google on the mask -- you'll find it). So the big secret that I had to learn was leave it loose. The headgear essentially just keeps it in place - you only need to tighten it so that the silicone seals.
Also a clean face and a clean membrane can be an issue. If you have oily skin, wash nightly prior to masking up (I don't have that problem thankfully) also if you have oily skin you should probably clean the membrane (at minimum) each day. I put mine in a solution of 1 drop liquid dish soap (brand is whatever we have), about 1/2 to 3/4 cup of vinegar and about 2-3 cups of water. I soak it for about 2 hours, rinse and let it dry. I clean it about every 4 times I use it.
So -- loose and clean....

The ComfortGel is a pretty good mask IMO!!!!! It works well for me, but has been relegated to "backup". I found the AEIOMed Headrest (Aura, or whatever they're calling it this week) which is a nasal pillow mask. I don't mouth breathe so a pillow mask is perfect (as is the nasal interface of the CG). Again -- size matters!!! I was using the Large cannulas for a long time and was having leaks and sore nares etc. and found that the XL cannulas work great, so just another example. When you're dealing with a mask, size can make all the difference in the world.

It sounds like your insurance sucks -- big time!!! You might want to find out from your insurance company how they cover durable medical equipment and consumable supplies. Filters, Hoses, mask interfaces, masks.....etc.
It may be that every 3 or 6 months you are eligible for a new mask. Some DME's have a try it on policy or a 30 day return policy. If you try it on, lay down!! Don't try it sitting or standing unless that's the way you sleep naturally. If you can try it for 30 days or less and return it for another size or type, take advantage of that policy!!! Try as many masks as you can.

I even have a full face mask in my collection for those nights when my nose is so plugged up it's pointless -- I've used it maybe 3 or 4 times in the year and a half I've been on the hose (it leaks badly because of the beard, but it's better than no mask at all!!!!!). In summer I use heated humidity at level 2 on my HH. During winter I use passover (which REALLY helps with rainout).....
If you don't have one, you may want to pick up a "Neti Pot" (google on it) at the drug store and use it -- especially on those nights where you feel like congestion will be an issue.

I guess that's all the "wisdom" (if it can be called that) I can impart at the moment -- I just noticed everyone was focusing in on the machine......To me, a blower, is a blower, is a blower -- it's the mask that makes the treatment happen. You are fortunate in that you have a good blower that can provide you data -- get that card reader and software and start learning how to read the reports!!!!

I'm totally happy for you in that you're giving it another try -- it's very important to your health!!!!
Good luck
cheers
goose

[Edit to add: 7cm seems awfully low. I was titrated at 5, can't breathe until it gets to at least 7 and my APAP is set to a range of 11-15. If you feel like you're gasping for air, up the pressure, but once you get the software and reader, watch the reports -- they'll tell you if you need to go higher (higher is not necessarily better). I'd maybe even go to 10 -- only because that seems to be the "go-to" pressure for a lot of people. Then work from there - just an additional $.02.....]

My insurance did suck. It has since changed so I have no idea how my new one would react to me needing more supplies, etc. I guess I'll have to give them a call at some point and ask.

For the record, I think my existing mask is good. I do believe I need a full face mask however. I also believe I need to increase my pressure. I tried using the machine again last night and had intense feelings of claustrophobia and suffocation. Using Ramp is worthless at my setting (Starts at 4) as it only makes the suffocation worse. I don't remember it being this bad when I first got it. That's why I think I do need more pressure. I'll have to increase it gradually and see. Thank you for your advice.

Hi Alpha. Sorry to hear you're having trouble with your therapy. I haven't read all of the replies to your post so my advice may be redundant. It's great that you're taking control of this. It's the type of thing where you need to be active and conscientious in your approach in order to see improvements. There are no silver bullets with CPAP. It's up to each individual to see what works for them. It sounds like you do need a full face mask. I had the exact same problem as you with the stuffy nose (and also with mouth breathing). I've tried the mirage ultra and the mirage quattro and I find the quattro to be the best due to it being less bulky. My therapy improved vastly after I switched from a comfort gel. I also started using melatonin recently (1 mg before bed) and really helps me relax and not feel so anxious about wearing the mask. Also make you sure you get some exercise each day and avoid sugary foods and caffeine drinks close to bedtime. Good sleep hygiene goes hand in hand with good CPAP therapy. Let us know how you get along. Peace.

Thank you. I looked into the Quattro mask. I entered my measurements into the cpap.com mask finder and it stated that this mask was not an optimal fit; One of the few full face ones it listed as "recommendable" was a Comfortfull2 so I'm trying to source one through the auction site. Looks rather bulky though. We'll have to wait and see how it feels.

[Wulfman]

You can change your Ramp starting pressure.

You probably won't like the Comfortfull 2.

Did you select option #5 in this link? I don't know of any full face masks that WOULDN'T be listed if you put your measurement in there.

https://www.cpap.com/cpap-mask-sizing.php


Den

[Outlawswife47]

Just a hint....about your stuffy nose problem. I, too, have that problem but discovered it's not STUFFED...it's DRY. I use vaseline every night inside my nostrals and it solves the problem!! The vaseline doesn't seem to bother the nose cushions, either. I've only purchased 2 in the last year and they work fine!

[Wulfman]

Just a hint....about your stuffy nose problem. I, too, have that problem but discovered it's not STUFFED...it's DRY. I use vaseline every night inside my nostrals and it solves the problem!! The vaseline doesn't seem to bother the nose cushions, either. I've only purchased 2 in the last year and they work fine!

You might want to read this link then.

http://www.mayoclinic.com/health/petrol ... ly/AN00947

Lipoid pneumonia is NOT something I would want to contract.

Den

[nomoore]

Thank you both.

Well, the issue with my stuffy nose is regardless of whether I sleep with the machine or without it. I'm a side sleeper and regardless of the fact that I make sure my airways are clean and unobstructed before I go to bed, the lower nostril (right if I am laying on my right side and vice versa) gets blocked which means I have to breathe through a single nostril or mouth. Since I use a chinstrap to keep my jaw shut, I feel I suffocate by trying to breathe through a single nostril.

I have been successfully sleeping with a nasal only mask through one nostril for months now. My left one is often clogged to the point were it's difficult to blow it. Rinse your nasal passages with a Saline solution every night. Then set a higher air pressure on the machine to open the clear nostril up enough. I say learn how to set the pressure on your machine and raise the pressure until you can get to sleep with it without suffocating. Then start grabbing the data from your machine and get the fine folks here to help you with it from there.

[cpap joe]

Wow, look at all these "helpful" posts... only one person has told you to seek further medical help (lktnky said to repeat sleep study, which isn't a bad idea)

Seriously folks, it's great that you can take care of your CPAP needs on your own, but do you really think that is the best advice to give someone you don't know?

I would hold of on buying software and instead find yourself a good pulmonary physician that specializes in sleep and let him worry about your downloads for now. Call your local sleep labs and see if they can give you a good recommendation. These fine PAP users here will give you all the support you need, but let's let a doctor figure out what is going on with you and maybe they can help with getting future supplies.

[Wulfman]

Wow, look at all these "helpful" posts... only one person has told you to seek further medical help (lktnky said to repeat sleep study, which isn't a bad idea)

Seriously folks, it's great that you can take care of your CPAP needs on your own, but do you really think that is the best advice to give someone you don't know?

I would hold of on buying software and instead find yourself a good pulmonary physician that specializes in sleep and let him worry about your downloads for now. Call your local sleep labs and see if they can give you a good recommendation. These fine PAP users here will give you all the support you need, but let's let a doctor figure out what is going on with you and maybe they can help with getting future supplies.

Sure......."advice" is free......doctors aren't. This isn't rocket science......it's only air. One of the problems is finding a "good" sleep doctor. I had a pulmonary physician who didn't know diddly squat about sleep medicine and his philosophy was (and still is, from what I've heard) that LOTS of pressure is better than what you really need. Far too many sleep doctors don't believe in the accuracy of the data from the machines and many don't even know how to download the detailed data.
The problem with sleep studies is that they're only a one-night snapshot at a bad night's sleep......in a foreign environment.

We're ADULTS here and if the original poster really wanted to go back to the doctor, he probably would....or maybe he will.

We try to help the users with what the medical professionals fail to do......understanding their condition, their equipment and that they CAN take control of their own therapy.

People with diabetes do it EVERY day.


Den

[nomoore]

Wow, look at all these "helpful" posts... only one person has told you to seek further medical help (lktnky said to repeat sleep study, which isn't a bad idea)

Seriously folks, it's great that you can take care of your CPAP needs on your own, but do you really think that is the best advice to give someone you don't know?

I would hold of on buying software and instead find yourself a good pulmonary physician that specializes in sleep and let him worry about your downloads for now. Call your local sleep labs and see if they can give you a good recommendation. These fine PAP users here will give you all the support you need, but let's let a doctor figure out what is going on with you and maybe they can help with getting future supplies.

It probably should have been said more than once that he should definitely be seeing a doctor for his heart issues, even if they are caused by the sleep apnea. That's not really what he asked us about though. He asked us for help with making his already prescribed treatment for OSA work. He has already been through the whole sleep study thing. He already has a prescription for the CPAP. In fact he already has the equipment. The "process" failed him once already though, just like it has failed so many of us. The pulmonary physician may put him on something for the heart in the short term but what do you think will be best for the long term? Most likely its going to be making the ALREADY PRESCRIBED treatment work. He may get really lucky and find the combination of Sleep Lab, Doctor, and DME that can really help him. But he also took the time and effort to find us here instead because he is disgusted with the "process". Would you have us say "go back to the doctor" risking him getting discouraged and not finding help at all? I think it would be less risky for US to help him and encourage him. And if the need arises, maybe we can ease him back into the idea of professional care.

[cpap joe]

I'm sorry, I didn't realize how anti-doctor these forums are. Sleep apnea is a medical condition and should be monitored by a doctor, not someone who thinks CPAP therapy is "only air". I know you are all very happy for how clever you are and you think you can handle this all yourself, but this is more than "just air". And by the way, he should see a cardiac specialist if he is having heart problems, not a pulmonary physician. I do agree that there are bad doctors out there, but that doesn't mean you should just give up on finding one.