Advice needed for struggling CPAP user

[Fubblin]

I have been diagnosed with Irregular Delayed Sleep Wake Phase Disorder since I was a toddler, it prevents me from having any kind of set schedule with my sleeping routine. I have had 5 separate sleep studies done and have not been able to fully complete a single one. The only data I have is from 1 hour and 45 minutes I was able to sleep during one study where I had the flu, was running a fever, had taken 650 MG of Hydrocodone and 300mg of Gabapentin for back pain and was up for 49 hours prior to the study (the sleep tech was surprised I was able to sleep at all.) It was this study that diagnosed me with sleep apnea with the recommendation for auto CPAP. I should also add I do not snore and I don't breathe through my mouth.

I have had my Dreamstation for almost 8 weeks and have a total of 0 nights spent actually sleeping with my machine/mask. It is extremely difficult for me to sleep under normal conditions due to my circadian rhythm disorder so as you can imagine getting used to CPAP has been incredibly difficult and frustrating. I have tried several different masks so far as well as a range of starting pressure settings to no avail. I have tried each mask type and a few of the same type. Each mask I have tried has major flaws which I have not been able to get used to. Some cause pain while others are uncomfortable, loud or flat out don't fit me. When I first got my machine I spent a great deal of time wearing it during the day to get used to the sensation of positive air pressure. I think I can get used to the pressure with time if I could only find a mask that does not make me rip it off in frustration or pain after several hours of trying to sleep. I have even tried using my CPAP when I was awake for 57 hours and still could not fall asleep, even cycling between my different masks. I have also tried to associate my therapy with pleasant thoughts and positive affirmation that this will help improve my quality of life to no avail.

My sleep doctor basically told me I am S.O.L and J.W.F if I can't find a mask I can work with and my DME will not let me try a new mask for another 2 months as I have tried several with them already. My sleep quality has been deteriorating and I am incredibly desperate to find any solution that will help me actually sleep with my machine. I am about ready to give up and just accept the fact that not only can I not keep any sleep schedule, but the sleep that I do get is very poor in quality and makes me feel as if I have not slept at all. The impact it is having on my mental health and social life is becoming too much to bear.

I am asking for any advice on what I can do to actually start getting the therapy I need. My DME won't let me try any more masks and I feel as if my sleep doctor has written me off. Any help would be much appreciated.

Masks I have tried so far
Dreamwear, Airfit P10, Nuance/Nuance Pro Gel, Wisp, Mirage Quatro, Amara Gel, Swift FX, Pilairo Q, Mirage Swift.

[zoocrewphoto]

Welcome to the group.

Which of those masks do you currently have in your possession? Please tell us what problems you had with each. We may be able to help you improve your usage of the mask.

Also, which version of the dreamstation do you have, and what pressure settings were you prescribed?

Tell us about any issues, and we will help you solve each.

I have DSPS too, so I understand that you can't always sleep when you want. But eventually, you do sleep, and you need the cpap on during that time. The problems are going to be adjusting to the mask, pressure, etc, which are common problems. We can help you with that.

[Fubblin]

I currently have the Dreamwear, Wisp, P10, Nuance Pro Gel, Mirage Quattro and Amara Gel.

Dreamwear - It hurts my Columella (all pillow sizes) and the area just below my nose/above my mustache. It is loud but I can get used to it. After 30 minutes or so it starts to make my outer nostrils sore. I have tried every pillow and I have the medium and small headgear.

Wisp - The headgear is very uncomfortable. The medium and large pillows put pressure on my sinuses and cause my nose to get stuffy and irritated causing me to struggle for air. My warm breath upon exhaling is also unpleasant with this mask.

P10- The headgear does not fit, when I cut the straps to make it smaller the pillows them selves create sores in my nostrils that are very painful after only 30-40 minutes of use.

Nuange Pro/Nuance Pro gel- Very painful on my nostrils.

Mirage Quattro - Bulky and uncomfortable headgear, not practical for how much I toss and turn.

Amara gel - Bulky and uncomfortable headgear, also not practical for tossing and turning. The mask itself was uncomfortable and caused a rash on my face.

Swift FX- Very painful on my nostrils, loud but I could get used to it.

Pilairo Q - Painful on my nostrils and Columella.

Mirage Swift - Painful on my nostrils and Columella as well as the area just under my nose. The tube got in the way alot.

With every mask sans Dreamwear my restless sleeping habits would cause me to fight with my tubing. A tube management system above my bed helped slightly but I would often wrap the tubing around my head or struggle to keep my mask fit without leaking.

I have the AUTO Dreamstation, they persribed me 4-20cmH2O but I changed it to 7.5-18cmH2O because I felt starved for air. I have tried different starting pressures and ramp/auto ramp settings but I have not actually slept with a mask so I don't know what my max pressure should be yet. All of my sleep studies have been inconclusive and the prescription is based off less than 2 hours of recorded sleep data.

My IDSPS really hampers my sleep, sometimes I can only stay awake a few hours after waking up while other times I cannot sleep for 48+ hours.

I was in 2 clinical studies for Circadian Rhythm disorders but the data was inconclusive. The main issue comes from the specific type of delayed sleep wake kind, being irregular the only concrete studies done have been with children suffering from mental retardation and the elderly with dementia. I have only ever had 1 doctor who had some experience with my affliction and he basically told me there is nothing I can do but adapt my social and work life around it. I still have the issue of only successfully sleeping with CPAP while sick, on painkillers/muscle relaxers and over 2 days without sleep and even then only recorded less than 2 hours of actual sleep.

[Julie]

Hi, have you tried something like Ambien or melatonin on a temporary basis to help you get used to any mask and fall asleep?

[Fubblin]

Julie I have taken Ambien, Lunesta, Sonata melatonin and I am even on 300-600mg of Gabapentin at night for an unrelated injury. When I was first starting on my therapy and was very anxious I tried Xanax and Klonopin. I have a very difficult time getting to sleep quite often, even when I have been awake for 24-48+ hours. Between the pills, hypnotherapy, acupuncture and light therapy I am at a loss as to what else I can try to make acclimating to CPAP therapy easier. I have been unsuccessful even under the most extreme of circumstances so far (57 hours without sleep +300mg of Gabapentin.)

[Cardsfan]

Since you already have the Swift FX, you could try the Swift FX Nano. Just order the part that goes over the nose, the nasal mask, and it will work with the Swift FX headgear. I found the pillows uncomfortable, and liked the Nano better.

[herefishy]

Since you mention a lot of the masks make your nasal area sore, have you tried loosening the straps? Most masks need to be fairly loose because they inflate slightly to make a seal. Also, a little used mask now is the Mirage Activa, which is my mask of choice. Might pay for you to buy one from someplace like CPAP.com.

[Fubblin]

Since you already have the Swift FX, you could try the Swift FX Nano. Just order the part that goes over the nose, the nasal mask, and it will work with the Swift FX headgear. I found the pillows uncomfortable, and liked the Nano better.

I actually tried the Nano cushion at my DME when I was switching from the Wisp to the Swift FX. From the 10 minutes I used it I had similar problems to the Wisp. The headgear on the Swift felt much better to me than the cumbersome and tight Wisp headgear but I still had pressure on my sinuses and nasal ridge. The tip of my nose would touch the cushion and my anterior nares would rub against the bottom of the cushion when laying on my side. I also noticed the same bothersome warm air lingering on exhalation. My nose became stuffy within a few minutes. Most of these complaints are shared with the wisp.

Since you mention a lot of the masks make your nasal area sore, have you tried loosening the straps? Most masks need to be fairly loose because they inflate slightly to make a seal. Also, a little used mask now is the Mirage Activa, which is my mask of choice. Might pay for you to buy one from someplace like CPAP.com.

I have adjusted all of the nasal pillow masks as much as I could, most would hurt even if they were loose enough to leak. I have tried all the combinations of pillow and headgear sizes for the masks I have tried so far. Sleeping on my side was a trade off between slightly more comfort (but still slightly painful) and leaks, or a tight seal but pain and soreness on the anterior nares. I am not sure the name of the 2 nasal pillow masks I used for my first 2 sleep studies but I noticed the pain a lot during the 4 hours I tried to sleep. My anterior nares, columella and philtrum/upper lip area might just be too sensitive for nasal pillows as these areas were also irritated with the Dreamwear mask.

I will look into trying the Mirage Activa but it looks like it would have the same problems that prevented me from staying with the Amara Gel or Mirage Quattro. Has anyone tried them that can compare fit? My DME will not let me try anymore masks and I would rather not waste the money if it is similar to the other masks I have tried of the same type.

[Janknitz]

Your complaints of noise with nasal pillow masks suggests leaking, and pain means they are too tight. See my swift Fx fitting tips in my signature below. It applies to all nasal pillow masks excel the DreamWear which does need to be more tight.

I suspect your moustache is a culprit, too--it's getting in the way of the correct angle for nasal pillows. The Tap Pap MIGHT work because it doesn't rest on the upper lip. But the moustache may still interfere, I'm not certain.

FF masks are very hard to seal and get comfortable with.

Any chance you'd shave the moustache to see if it helps? It can always be grown back. Once you get the idea of a good mask fit you may be able to grow back the facial hair and adapt to it.

[Julie]

I hate when rumors continue to be spread... SOME full face masks are hard to seal on SOME faces, but by no means all - lots of us wear them and have no problem, plus they alleviate a lot of the problems some nasal masks do have for many people.

[Fubblin]

Your complaints of noise with nasal pillow masks suggests leaking, and pain means they are too tight. See my swift Fx fitting tips in my signature below. It applies to all nasal pillow masks excel the DreamWear which does need to be more tight.

I suspect your moustache is a culprit, too--it's getting in the way of the correct angle for nasal pillows. The Tap Pap MIGHT work because it doesn't rest on the upper lip. But the moustache may still interfere, I'm not certain.

FF masks are very hard to seal and get comfortable with.

Any chance you'd shave the moustache to see if it helps? It can always be grown back. Once you get the idea of a good mask fit you may be able to grow back the facial hair and adapt to it.

Forgive me, when I said mustache I meant the upper lip/philtrum area. I do shave and the issue persists no matter my facial hair situation. My P-10 is very loose and still hurts my anterior nares and columella. Your mask fitting guide was actually one of the first pieces of information that helped me when I discovered this forum after starting CPAP with my first nasal pillow mask. Even if I just gently hold the pillow by itself, the incipient pain seems unavoidable with the masks I have tried thus far.

Leaking was not really a huge issue with the full face masks I have tried so far. My main gripe with the ones I have tried is the cumbersome and uncomfortable headgear and the pressure the mask put on my sinuses and or cheek area. The sinus pressure is the same problem shared with the 2 nasal masks I have used.

[chunkyfrog]

Which face frame does your Wisp have?
I tried the cloth, but hated it, because it allows the cushion to press too firmly on my face next to my nose.
The silicone frame clings to my face, and lifts the cushion so it just kisses my cheeks.
This frame is also more durable.
Nasal pillows must just barely touch the nares. Air fills them up until they gently seal with your nose.
If you are getting a piggy nose, it's too tight.

[Fubblin]

Which face frame does your Wisp have?
I tried the cloth, but hated it, because it allows the cushion to press too firmly on my face next to my nose.
The silicone frame clings to my face, and lifts the cushion so it just kisses my cheeks.
This frame is also more durable.
Nasal pillows must just barely touch the nares. Air fills them up until they gently seal with your nose.
If you are getting a piggy nose, it's too tight.

I have 3 headgear's for the Wisp. The regular and large fabric frame and the silicone frame, all cause pressure on my sinuses around the nose with some mild discomfort on the nasal bridge no matter the combination of headgear and cushion size. Even when nasal pillows are loose enough to almost leak I have not been able to use them without pain. During my sleep studies I noticed the same thing with nasal pillows and I had the technicians adjusting my mask if needed. I heard about a kind of hybrid nasal/nasal pillow mask that inflates to cause a full seal but I cannot remember the name of the mask. Out of all the masks I have tried so far and sleep studies I have done, my time spent sleeping on CPAP is less than 2 hours total. I only managed to get that sleep during one of the studies.

[Cardsfan]

There are masks call SLEEPWEAVER that are all cloth. Have you seen those?
Whatever you do- do not give up. There is a mask out there for you. https://www.cpap.com offers return insurance, if it doesn't work out, return it in 30 days. I did that once, with a new mask I wanted to try, but it ended up I could not use it, so I sent it back.

And sham on the Dr. who gave up trying to help you.

[Michelle-OH]

I can only speak to the P10 since that's all I've used, but I found I was having nasal soreness till I increased the size of my pillow, when I used the size suggested by my DME the pillow actually felt like it was going up in my nostril a bit and that made it sore. Good luck working things out.