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Advice needed for struggling CPAP user
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Fubblin Offline

Members

Posts: 18
Joined: Jul 2016

Machine: Phillips Respironics Dreamstation Auto CPAP
Mask Type: Nasal mask
Mask Make & Model: Phillips Respironics Dreamwear
Humidifier: DreamStation Heated Humidifier
CPAP Pressure: 7.5-18 cmH20
CPAP Software: EncorePro

Other Comments: Diagnosed with IDSPS/IDSPD. Recovering from L3-S1 herniated discs.

Sex: Male
Location: USA

Post: #1
Advice needed for struggling CPAP user
First I would like to say that this forum has helped me a great deal with finding answers to questions I had. Now a little about my situation and the problem I am having.

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.
(This post was last modified: 09-02-2016 12:05 AM by Fubblin.)
09-02-2016 12:03 AM
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srlevine1 Offline

Advisory Members

Posts: 227
Joined: Sep 2015

Machine: ResMed Airsense Autoset (S10)
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage Activa LT
Humidifier: Internal to S10
CPAP Pressure: 12-15.6
CPAP Software: ResScan SleepyHead Other Software

Other Comments:

Sex: Male
Location: Westlake Village, California USA

Post: #2
RE: Advice needed for struggling CPAP user
It is the rare doctor that goes the distance to help you resolve issues beyond a 30-minute consultation. I can empathize with your search for a solution.

I used to sleep at odd hours and for various lengths of time. Sort of an occupational hazard for an IT guy (Chief Technologist) responsible for a billion dollar financial system. I use to be on a bi-phasic program, then tri-phasic, etc. and found it really didn't matter much when I slept, only that I used the machine for at least four hours at a time. The weird schedule made compliance reporting strange due to ResMed's reset after 12:00pm.

As for masks, I tried about fourteen before I settled on an older ResMed Mirage Activa and then the Activa LT. It seems to work for me -- even with the tossing and turning. When playing with new masks, I used ResMed's "Mask Fit" function which simply blows air into the mask without anything being recorded. It was a struggle, but I finally found my mask. And, don't give up hope -- you will too! The only question is whether it is sooner rather than later.

As for your DME, as long as your physician is willing to write specific mask prescriptions that will be honored by your insurance, they have no say in the matter. Most vendors care less about the patient than they do they payment. So treat them accordingly: polite, professional, but firm.

Have you ever considered professional-grade hypnosis to help deal with mask issues? A friend of mine who had an aversion to most masks and felt claustrophobic got zero help from her doctor, but one of her friends convinced her to try a few sessions of clinical-grade hypnosis from a psychiatrist. The issue was resolved in a few weeks and she also was given some anti-anxiety meds to help her through the process. I always wondered if the meds were placebo's -- but they seemed to work.

Best of luck with your quest.

"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
09-02-2016 02:48 AM
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Fubblin Offline

Members

Posts: 18
Joined: Jul 2016

Machine: Phillips Respironics Dreamstation Auto CPAP
Mask Type: Nasal mask
Mask Make & Model: Phillips Respironics Dreamwear
Humidifier: DreamStation Heated Humidifier
CPAP Pressure: 7.5-18 cmH20
CPAP Software: EncorePro

Other Comments: Diagnosed with IDSPS/IDSPD. Recovering from L3-S1 herniated discs.

Sex: Male
Location: USA

Post: #3
RE: Advice needed for struggling CPAP user
Thank you for the advice. I have actually had hypnotherapy done without much success. I have also had acupuncture and sleep hygiene therapy to try and help but also with little success. A few years back I had some results with Melatonin supplements and a slew of sleep medicine trials (ambien, lunesta etc.) but I only ever saw improvements for 1-2 weeks before reverting. Various anxiety medications have had mixed results over the years but nothing that would trend more than a week or so. Lastly I have done a 3 month rotating diet at a doctors request to gauge the effects that different foods had on my sleep quality.

I tried the different polyphasic sleep schedules over the years. I could do biphasic and a hybrid everyman cycle when I was younger but it has become difficult to achieve now.

I have been able to get a good seal on most of the masks I have tried and tested with the mask fit option on my Dreamstation. The problem is with discomfort or pain on all but 1 mask which just did not fit.

I think I need to get a new sleep doctor as he spends so little time with me each visit and just tells me to keep trying CPAP (last week he saw me for literally 2 minutes.) The main issue I have is with my Irregular delayed sleep wake phase syndrome and finding a doctor that knows even a little about it.

I will see if I can get my PCP to write me a script for a new mask.
09-02-2016 03:31 AM
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icyura10 Offline

Preferred Members

Posts: 197
Joined: May 2016

Machine: RESMED AirCurve 10 VAUTO
Mask Type: Nasal pillows
Mask Make & Model: Phillips Respironiscs DreamWear under the nose nasal ma
Humidifier: INCLUDED
CPAP Pressure: IPAP (20); EPAP (12); PS (8)
CPAP Software: ResScan SleepyHead

Other Comments: I just dropped in to see what condition my condition was in!

Sex: Male
Location: I'm just a Galactic Traveler Traversing the Universe on a Blue Rock!

Post: #4
RE: Advice needed for struggling CPAP user
Fubbin,

Welcome to our little club. Sorry you too are afflicted with this pesky issue but be thankful there's a therapy that can address but not necessarily cure the condition for you.

I've never been officially been diagnosed with Irregular Delayed Sleep Wake Phase Disorder but after reading about it, it seems like an old friend.

You didn't mention what they assessed your AHI value at so the "severity" of your Sleep Apena can't be used for relative comparative purposes.

My sleep pattern is all over the map too so I suspect I might be polyphasic. I usually only get 30-180 minutes of sleep at a time, more frequently in the 90 minute range. One of the things I do is to use the machine whenever I lay down, be it for just a rest (sometimes I nod off for a nap) or to actually attempt to acquire sleep.

Using only the information in your profile indicating your pressure setting to be from 4 to 20 cmH2O it might be useful to have an idea what your normative pressure levels average.

Some "Masks" seem to respond to different pressure levels better than others. The higher the pressure you require, it seems the fewer mask choices are available to you.

Your comment;

Quote:Each mask I have tried has major flaws which I have not been able to get used to.

There's no easy way to say this; it just takes time to become adjusted to having a foreign object attached to your face whenever you sleep.


Quote:Some cause pain while others are uncomfortable, loud or flat out don't fit me.


Comfort is important! With that it's important to find a mask that's both comfortable and are therapeutically functional for you.

The sound issue might be controlled with ear plugs or noise canceling head phones with no sound. I used to get my ear plugs at a gun and ammo shop when I used them.

Quote: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.

Can you articulate exactly what frustration and/or pain you are experiencing. Yes I realize you stated earlier they are uncomfortable, loud or flat out don't fit me.

Quote: 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.

If I were to guess, it sounds like your desperately trying to conform. With that, we both know, sometimes in the best of circumstances, the best we can achieve is to just lay in bed and count the holes in the ceiling tiles. I can't tell you how many times I've counted those all those holes over and over and over. (yeah, yeah, yeah, if I could try to sleep in the Great Albert Hall, then I'd know how many holes it takes to fill the Albert Hall)

For me it's not a matter of trying to go to sleep, it seems to be more of an environmental thing.

If the TV i s on at night and I set a sleep timer on the TV; when the TV goes off; I sense the flickering of the light has ended and it wakes me up.

Sometimes similar things happen with the radio.

I unplug the phone and turn off the cell.

The computer is off so it doesn't make any noise.

Maybe you'll need to disable the doorbell, tape the light switched down when you go to bed.

Similar to srlevine1, I too was responsible for the support of many large world wide systems which required me to be "on call" 24 hrs of every minute of my life. It was easy for me because of as you've described it, Irregular Delayed Sleep Wake Phase Disorder gave me unbelievable sustainable run time to deal with the crisis at hand when my peers would require sleep after 16 hrs, I just kept going.

But the Irregular Delayed Sleep Wake Phase Disorder is a double edge sword. For me, I'm deliberately trying to achieve small accomplishments to achieve longer and longer periods of sleep.

srlevine1 made mention of hypnosis, that might work.

Hang in there, we're all in this together and as smart as the sleep doc are, I'm continually learning more here than I can possibly get from a visit with my sleep Dr.s


As for your:
Quote:Irregular delayed sleep wake phase syndrome and finding a doctor that knows even a little about it.

If you are fortunate enough to reside near a medical school, they might have a dedicated sleep disorder group. I'm that fortunate, and while I'm truly blessed with having a really good sleep Dr., it's the sleep technician in his office that is the jewel in his crown.

That's because my sleep tech, seems to have at his avail literally every mask under the sun. Mine took the time to sort out which mask would work best for me considering my pressure settings, how I slept and 13,000 other things to consider. Once my sleep tech figured out what mask would likely work best for me, the Dr. put forth an Rx for that specific mask. ,

I'm still trying to get some sleep...

Warning: Eating chocolate may cause your clothes to shrink!
[Image: ry6XtE9.gif] <---- That's ME!
(This post was last modified: 09-02-2016 04:11 AM by icyura10.)
09-02-2016 03:55 AM
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Fubblin Offline

Members

Posts: 18
Joined: Jul 2016

Machine: Phillips Respironics Dreamstation Auto CPAP
Mask Type: Nasal mask
Mask Make & Model: Phillips Respironics Dreamwear
Humidifier: DreamStation Heated Humidifier
CPAP Pressure: 7.5-18 cmH20
CPAP Software: EncorePro

Other Comments: Diagnosed with IDSPS/IDSPD. Recovering from L3-S1 herniated discs.

Sex: Male
Location: USA

Post: #5
RE: Advice needed for struggling CPAP user
Thanks for the response.

I currently have the Dreamwear, Wisp, P10, Nuance Pro Gel, Mirage Quattro and Amara Gel. I will list my issues with the masks I have tried

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. In my teens and early/mid 20s I could cope by simply catching up on sleep during the weekend (sometimes literally sleeping the weekend away.)

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.
(This post was last modified: 09-02-2016 04:13 AM by Fubblin.)
09-02-2016 04:11 AM
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icyura10 Offline

Preferred Members

Posts: 197
Joined: May 2016

Machine: RESMED AirCurve 10 VAUTO
Mask Type: Nasal pillows
Mask Make & Model: Phillips Respironiscs DreamWear under the nose nasal ma
Humidifier: INCLUDED
CPAP Pressure: IPAP (20); EPAP (12); PS (8)
CPAP Software: ResScan SleepyHead

Other Comments: I just dropped in to see what condition my condition was in!

Sex: Male
Location: I'm just a Galactic Traveler Traversing the Universe on a Blue Rock!

Post: #6
RE: Advice needed for struggling CPAP user
Some folks have used various things as "mask aids."

Lanolin, Baby Wipes, and "Utter Tuff", yup... that's a technical term! Huhsign

When I was using the "P-10's" I used a product called "AYR". It's a saline gel with aloe. No noticeable odor could I detect, it was cool and I never felt like it was "gooey" or that it left anything of a "residual" film on my skin.

I'm not pushing that product mind you as there's a few available. Should you choose to use a product like AYR, you can find it at your pharmacy, sometimes in the pharmacy section of your grocery store. I used to get mine at a large commercial "SuperCenter".. but I'm snot supposed to say Wallllllllllyyyyyy'sMaaaaaaaaaaart... so I won't! Oh-jeez Maybe it's I'm snot supposed to put a link to it where you can buy it! Okay

If you decide to try AYR it only requires a thin film on the device where it seals against your skin, be it your nostrils, or abound your nose for a nasal system. I can't deal with a Full Fase mask as I want to get both my hind legs and front paws on the thing and pry it from my face so I can't address its use on a FFM.

Warning: Eating chocolate may cause your clothes to shrink!
[Image: ry6XtE9.gif] <---- That's ME!
(This post was last modified: 09-02-2016 04:30 AM by icyura10.)
09-02-2016 04:28 AM
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Fubblin Offline

Members

Posts: 18
Joined: Jul 2016

Machine: Phillips Respironics Dreamstation Auto CPAP
Mask Type: Nasal mask
Mask Make & Model: Phillips Respironics Dreamwear
Humidifier: DreamStation Heated Humidifier
CPAP Pressure: 7.5-18 cmH20
CPAP Software: EncorePro

Other Comments: Diagnosed with IDSPS/IDSPD. Recovering from L3-S1 herniated discs.

Sex: Male
Location: USA

Post: #7
RE: Advice needed for struggling CPAP user
I have tried baby wipes with the Nuance Pro but it was still very painful. I have used a saline solution on the Nuance Pro/Pilairo Q but it was still painful. I might check out AYR if they sell it here. Will it really alleviate the pain I get with nasal pillows? Each nasal pillow I have tried so far has been very painful. I have yet to try a saline solution for the nasal masks as the 2 I have tried put too much pressure on my sinus region. Full face masks have also urged every fiber of my being to rip them off.

I am willing to try more masks but I think nasal pillows are just too painful for me. I will look into some mask aids to assist. I would really love to use the Dreamwear without pain as it has been the most comfortable mask minus the irritation.
09-02-2016 04:40 AM
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icyura10 Offline

Preferred Members

Posts: 197
Joined: May 2016

Machine: RESMED AirCurve 10 VAUTO
Mask Type: Nasal pillows
Mask Make & Model: Phillips Respironiscs DreamWear under the nose nasal ma
Humidifier: INCLUDED
CPAP Pressure: IPAP (20); EPAP (12); PS (8)
CPAP Software: ResScan SleepyHead

Other Comments: I just dropped in to see what condition my condition was in!

Sex: Male
Location: I'm just a Galactic Traveler Traversing the Universe on a Blue Rock!

Post: #8
RE: Advice needed for struggling CPAP user
Like I said above;

Quote:If you are fortunate enough to reside near a medical school, they might have a dedicated sleep disorder group. I'm that fortunate, and while I'm truly blessed with having a really good sleep Dr., it's the sleep technician in his office that is the jewel in his crown.

That's because my sleep tech, seems to have at his avail literally every mask under the sun. Mine took the time to sort out which mask would work best for me considering my pressure settings, how I slept and 13,000 other things to consider. Once my sleep tech figured out what mask would likely work best for me, the Dr. put forth an Rx for that specific mask.

Warning: Eating chocolate may cause your clothes to shrink!
[Image: ry6XtE9.gif] <---- That's ME!
09-02-2016 04:53 AM
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Fubblin Offline

Members

Posts: 18
Joined: Jul 2016

Machine: Phillips Respironics Dreamstation Auto CPAP
Mask Type: Nasal mask
Mask Make & Model: Phillips Respironics Dreamwear
Humidifier: DreamStation Heated Humidifier
CPAP Pressure: 7.5-18 cmH20
CPAP Software: EncorePro

Other Comments: Diagnosed with IDSPS/IDSPD. Recovering from L3-S1 herniated discs.

Sex: Male
Location: USA

Post: #9
RE: Advice needed for struggling CPAP user
Unfortunately the technicians at my doctors office only carry 2 masks, one of them being the Nuance Pro. I might call the centers where I had previous sleep studies to see if one of the techs can work with me on finding the right mask. If not I will see if my PCP can write a script for a new mask.

I have left a message at the nearest university of medicine so we will see how that goes.. There is also a mayo clinic that is conducting sleep trials but it is just a bit too far for me.
09-02-2016 09:36 AM
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Sleeprider Online
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Posts: 3,342
Joined: Dec 2014

Machine: Resmed Aircurve 10 Vauto
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: Resmed Climateline
CPAP Pressure: Auto Bilevel 18/9, PS 3
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: Where they make Respironics

Post: #10
RE: Advice needed for struggling CPAP user
Fubblin what size nasal interface did you try with the P-10. Most people are surprised to learn the larger size is more comfortable, and that the openings on the pillows don't go IN your nose, but rest on the outside. Also, the For Her version is smaller, and comes with clips to adjust the strap size without cutting.

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09-02-2016 09:55 AM
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