C-Pap Compliance Frustration
Over 35 years ago, I was diagnosed with night terrors, hypnopopic hallucinations, chronic insomnia, sleep walking, sleep fragmentation and sleep apnea.
Some problems are controlled with meds, relaxation/visualization, sleep hygiene, sunshine, and Melatonin.
For years I have struggled with C-Pap.
The full face head gear requires tethering at the neck and I was in constant pain. I was often awakened by the leaky seals and farting-sounds…tmi…lol
I have a DreamWorks apparatus now, but I can't maintain compliance. For almost 3 months, I have experienced trigeminal neuropathy and the mask hurts my temples and jaw… I cannot take Tegratol.
And again, I'm struggling with the seal… I hate seeing the red frowning face. I often sleep with my mouth open and have resorted to taping my mouth closed…not a good idea, but then I get green smiley faces.
I'm stressed that Medicare won't pay due to the lack of compliance.
I don't know what to do…
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Hi @audriana, I think we all have struggled with wearing the CPAP mask until we find one that works well for us. I also use a full face mask. and have tried 3 or 4 different types of full face masks before finding the one that works for me – ResMed F20 full face mask. My sleep medicine PA also helped me with the CPAP nose and red face problem by suggesting I try a cloth cover over the mask so that it's between the face and mask. She shared a link with me for some she had recommended and I've been using them for about 2 years with good success – CPAP Comfort Cover: https://cpapcomfortcover.com/. They have different sizes for different masks for you to choose.
The second thing that helps me with the CPAP hose problem around the neck is to use a CPAP hose stand that fits under the mattress and holds the hose above your head. I toss and turn a lot also and this has really helped the hose problem — https://www.amazon.com/BodyHealt-CPAP-Hose-Holder/dp/B078HQ9RF5/ref=sr_1_7
Before I found the Comfort Covers for my full face mask, I washed my face at night and used a small amount of no petroleum CPAP moisturize and that helped with the mask seal. I haven't used the moisturizer much since I started using the comfort covers but it does help when your face is irritated from using the mask.
Is the Medicare compliance problem due to not keeping the mask on for 4 hours or more a night?
Yes, less than four, and almost not al all between May -June. Earlier in the year, I used it more–70%.
I dread having to return to full face because of the "pain in the neck"…lol and the tension in the shoulders.
Thanks for your feedback, suggestions and links. I appreciate the info. I have a teleconference in August.
I have some other issues to consider. Last April, 2020, I developed a Pleural effusion…950cc drained…residual pain from that.
I wonder If C Pap use contributed to the PE?
That would be a great question to ask at your August teleconference. Do you write down questions for your doctor appointments? I started doing that a few years ago so that I don't forget what to ask my doctor. One great tool I've found are some tips on the Patient Revolution website here – https://patientrevolution.org/visit-tools,
I have a health-care provider who refers to me as a "great historian"…lol.
Ive kept journals for years. I checked out the Patient Revolution website. Thanks for the tip.
I've been able to anchor the hose, per your suggestion, and that is helping with more green smiley faces
Hi @audriana, I’m also struggling with trying to get use to my CPAP. I was diagnosed with insomnia two years ago and this isn’t helping. I’ve stopped using my CPAP temporarily after seven months of frustration from not being able to get to sleep with my mask on. I’m waiting until 9/3 (Medicare requirements-every six mos) to get yet another mask. I’m going to try ResMed N30i mask as it looks the least restrictive. I sleep with my mouth open and have started using tape which I feel is helping. I get severe dry mouth and use Xylimelts (sleep doc recommended) and they work great. For my insomnia I’m doing visualization, sleeping hygiene, sunshine. My doc suggested I take Magnesium Glycinate 400 mg. Benefits include helping manage headaches (I get ice pick headaches), anxiety and insomnia. I take it one hour before bedtime. What I did to qualify for my equipment was wear it for at least four hrs in the evening while watching tv. I would sometimes even doze off with it on but go to bed and a different story! That’s the only way I could qualify since, like you, I can’t sleep with it on. Very frustrating!
Thanks so much for sharing. That's a good idea regarding TV/Cpap sharing time. When I wake up too early, I'll keep the CPap on as I read or watch TV. At 3:30, it's too early to get out of bed and do something…sleep hygiene 101.
My current sleep specialist told me Cpap isn't meant for insomnia but "luckily" I qualify in other ways…what a mixed blessing.
I didn't know about Xylamint but I do take Magnesium. I think there are some basics that we're not even privy to by our sleep doctors. For example, for years I was taking Vit D, then Melatonin was added. When I switched docs, he told me Melatonin wasn't supposed to be taken as needed. He told me to take it daily two hours before I anticipate falling asleep and not to exceed 6mg.
In another example, the sleep technician for my last sleep study let me in on the secret: sleep fragmentation. He wasn't supposed to disclose data. Yet, at my follow up appointment, the sleep specialist didn't mention SF at all. I finally asked him about it.
I'm a very proactive person and I advocate for myself, but it takes alot of energy and effort to fill-in the gaps. In 30 years, I've had 3 sleep specialists and none of them have been forthcoming with integrative strategies. They seem to be concerned with the data and compliance, but not necessarily the healing attributes of true quality sleep.
BTW…they have always diverted the issue of insomnia to my psychiatrist.
Your info was really helpful. I hope I was able to reciprocate.
Oh yes @soledad02 …I bought a wedge pillow, on sale at Penney's. I place it under the fitted sheet. This current sleep specialist is also a pulmonologist and one of his recommendations was a new mattress that would incline
I invested $50 on the pillow. I can't afford $5000.
@audriana a few years back my doctor suggested I sleep elevated. I tried several wedge pillows to no avail. Then I tried the Avana 5” elevator mattress that goes under my mattress. It was comfy and was able to sleep much better vs. the wedge. https://www.avanacomfort.com/mattress-elevator-5-inch.html I’m no longer using it. I went to an allergist for sinusitis and he has me doing a nasal rinse followed by Flonase before bed. Hoping the wedge works for you.
Does the magnesium gly work for the ice pick headaches?
My CPAP masks I've had all leaked, and I've had 8 of them! It finally came down to the question is my therapy working even with leaks. The answer was yes. I never average more that 1 apnea per hour which is fantastic. The doctors are leaving me alone about leaks now! That solved one big problem for me. Ihave others though which I posted about earlier. Do you have access to your CPAP data?