Forum · Extremely high pressure level makes sleep impossible

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[-] CommunicativeGoldFox7046 +0 points · 5 months ago

I was diagnosed with very severe sleep apnea and put on supplemental oxygen at night because of oxygen deprivation at times during the night. After getting my BiPap machine (ResMed AirCurve10 VAUTO) I was given 90 days to learn to "sleep 4 hours a night for 30 consecutive nights" at the assigned pressure level of 25/22 in order to receive Medicare coverage for the machine. Being brand new to CPAP, I found the pressure level to be extremely uncomfortable, even with a 45 minute ramp period. I could only endure the misery for 20 minutes at the most while awake, and falling asleep was impossible, but I kept trying each night for as long as I could stand it, then I would rip the mask off and go back to my oxygen so I could finally get some sleep. My sleep doctor refused to lower the pressure level for the first two months of my 3 month trial period, even temporarily to help me begin to get used to it. Finally, he relented and switched the mode on my machine to Auto, which allowed me to start with a much lower pressure, with the higher level to kick in later when needed if I fall asleep and begin having apnea events. Gradually I began to build up to longer periods of using the machine while awake during that last month of my trial period, after trying several different masks to find one that could withstand such high pressures, and finally actually fell asleep for 2 1/2 hours, the last night before they confiscated my machine for "non-compliance." At the same time they tell me I have to give up the oxygen because Medicare won't cover that if you have been diagnosed with sleep apnea, and they assume you are using the machine, and you can't use oxygen with the machine. So I'm in a tough spot right now while I wait for the next titration sleep study a month from now to start the process all over again. My hope is that the pressure level might be lower this time, and also they might determine whether I need the ASV machine instead of the BiPap I was trying to use. I would appreciate suggestions on how to adjust to such high pressure levels, as a light sleeper with Atrial Fibrillation and a new pacemaker, who is very sensitive to stress.

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[-] wiredgeorge +0 points · 5 months ago Sleep Commentator

I can relate to this somewhat. I have the Aircurve Bipap as well and my pressures are 25/21. I didn't have a bit of problem adjusting to these pressures though and can't put myself in your shoes from that standpoint. It was my understand that O2 CAN be plumbed into the mask; you might want to do some google research as this question has come up before on this forum. I don't use supplemental O2 so can't chime in much farther.

Are your issues mask related? I have tried several masks and found I ouldn't tolerate one of these and have found one I liked. The mask issue is made a lot more complicated when high pressures are required. BTW: I doubt I need a Bipap machine except a machine like the Airsense 10 is one of the few that can pump 25 pressure; most CPAP machines limit to 20. I could probably set my exhale pressure to 25 and not tell the difference but I am not you so keep searching for the answer and do check out the BiPap/O2 combiner as I am pretty sure it is out there.

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[-] DanM +0 points · 5 months ago Sleep Commentator

Hi CommunicativeGoldFox. There are patients who use CPAP or BiPAP along with oxygen, and there are attachments designed to allow oxygen to flow into the breathing circuit. Oxygen should only be required if the CPAP or BiPAP alone does not keep blood oxygen levels within an appropriate range. I have worked with many patients over the years who were placed on oxygen for sleeping but who no longer needed the oxygen while using PAP treatment. Unless medically necessary, Medicare and other insurance providers will usually not cover both treatments. As for adjusting to high pressures, this can be difficult. Many patients find that practicing while awake and not in bed helpful. Try using the machine during the day or in the evening while watching TV, reading, etc. This might also help prevent the anxiety of being exposed to treatment right at bedtime when you are tired and ready to fall asleep. Now that you and your physician know you have difficulty with the higher pressures, it might be worth asking whether he can start you at a lower pressure and increase you over the course of a few days or a couple of weeks as you become adjusted to treatment. Many modern machines can have their settings remotely adjusted. Best wishes, and please keep us posted on your progress!

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[-] CommunicativeGoldFox7046 +1 point · 5 months ago

Thanks so much DanM and WiredGeorge for your very helpful replies. I don't feel so alone now struggling with all these obstacles! I did practice with the machine during the day and early evening in my recliner throughout the 3 month trial period, and the distraction of TV or reading did help somewhat to get my mind off of the discomfort until the pressure got so high it was painful and made me nauseous. Once the dr. finally changed the machine to Auto mode, which lowered the starting pressure considerably, I began to make progress, and finally actually fell asleep for a while twice, just before my 90 day trial period ran out. I agree that the mask is a big part of the problem, as the constant blubbering and obscene noises the leaks create interfere with falling, or staying, asleep, not to mention the discomfort. So I tried to find the smallest, least oppressive masks which would also allow for both nasal and mouth breathing, since my nasal passages are narrow and often congested. The ones that worked best said not to tighten them too much, but there seemed no other way to stop the leaks. I still haven't found the mask that works well for me. As for the oxygen, I am resigned to giving it up and trying to get by until I get my machine back, or another one, after the next titration study. My new sleep doctor's nurse practitioner, who has taken over my case, tells me oxygen is toxic if you get more than needed, and using it with the CPAP or BiPap machine would be redundant. I guess that explains why insurance rarely covers both CPAP and oxygen simultaneously.

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[-] wiredgeorge +0 points · 5 months ago Sleep Commentator

Toxic? Hmmm never heard that one. What types of masks have you tried? I used a Simplus for about a year and it would howl like a banshee if there were leaks. I finally started using mask pads with the Simplus and found those quelled the noises and mitigated air in the eyes. Still leaked some but I didn't notice. I am a fairly large guy and used a Medium size mask cushion and found that a small actually fit much better. The mask size doesn't necessarily have anything to do with your body size; probably more the conformation of your face and especially your nose. I now use an Amara View which is full face but doesn't have the center pillar; just fits under your nose and have had ZERO leaks for 12 of the past 14 days. Never thought it would be possible. The two days with leaks because my chin dropped and the lower edge of the mask ended up in my mouth. These masks are supposed to work most effectively if installed fairly loosely but I have tighten down the straps a bit to get any of the masks I have to work.

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[-] CommunicativeGoldFox7046 +0 points · 5 months ago

I think the mask they had me use during the sleep studies was the Simplus, but It was quite uncomfortable for me. I tried a nasal mask, but really need a full face mask because of chronic nasal congestion. The ones I find least uncomfortable so far are the Amara View and the Res Med Air-Fit 10, but still have trouble with noisy leaks. Perhaps I should try the mask pads. Where do you get them, if they come in different sizes and shapes, how do you decide what to order? Another question: the only way I could sleep during the titration study was to take an Ambien, but my new sleep doctor does not recommend that. Has anyone had experience with the "natural" sleep aid Melatonin? I am thinking of trying that for this upcoming retitration study, provided my doctor thinks it is safe for me. Thanks for the good suggestions.

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[-] wiredgeorge +0 points · 5 months ago Sleep Commentator

I won't even try and comment on sleep aids as I have never used one. When I put my mask on and my head hits the pillow, I am OUT. As far as mask pads, I know they make them for the Simplus but not sure about other masks. Where does the Amara View leak? I am not sure if there are masks for that style mask but google will be your friend here or someone else may know. The mask pads I have for the Simplus were purchased on amazon and the maker name is really not condusive to recollection... remzzzz or something of the sort.

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[-] CommunicativeGoldFox7046 +0 points · 4 months ago

Updating my current situation with new questions. After losing my machine because I was unable to sleep with the 25 level pressure during the 3 month trial period, I had the re-titration study done two weeks ago, which was a disaster. I had asked the lab to call me if they had a cancellation, because the assigned date was too far in advance and my cardiologist urged me to get back working on learning to sleep with the machine as soon as possible, as the apnea was affecting my heart. However, they called for me to come in on the worst possible night, Saturday night, in the middle of a very busy, stressful weekend, and I had little chance to get ready, so arrived late and very stressed. I was in so much pain from my bad hip all night, in addition to being under considerable stress, which kicked my kidneys into overdrive so that I had to get up to go to the bathroom about every hour, so I was almost totally unable to sleep. It was the night the clocks were set ahead for daylight time, so I had one less hour to get in the hours of sleep needed to complete the titration study. It didn't help that the technician kept warning me every hour that I simply HAD to go to sleep so he could get the data he needed to work with. When he came in and shut off the machine at 5:30 am (4:30 on my body's time) to end the study, he said that he didn't know if it would be considered a valid study or not, since I only dosed off a couple of times for about 20 minutes or so, but he was able to get enough data to establish a suggested pressure level much lower than the 25 I was originally assigned, but with a higher back-up that would kick in if I had an apnea event. He said he would turn in the report by Monday and the doctor would decide what to do from there. First thing Monday morning I sent a fax to the doctor and Nurse Practitioner who took over my case, explaining why I was unable to sleep that night, and mentioning that since my cardiologist urged me to get back working on the machine as soon as possible, what I really need is not another sleep study, which could also be inconclusive, but to get a new machine and get started right away getting used to it. I've been waiting almost two weeks now and heard nothing from either the doctor or Nurse Practitioner, despite calling their office. My question is -- if the doctor refuses to order a new machine for me without another attempt at a sleep study, does anyone know if a home sleep study can be an acceptable alternative, and if so, is there one that can be used by a patient with a pacemaker? (I looked up the WatchPat200, which sounded like a great solution until I read that it cannot be used with a pacemaker.) Another question, if this doctor refuses to order the machine could I ask my primary care doctor to do that for me, or does it have to be a certified sleep doctor to qualify for Medicare coverage? Am I expecting too much to assume the doctor has had time enough to see the report and make his decision after two weeks? (My former sleep doctor took five weeks to read the report after my first study.) I would really appreciate any information about my possible options in the event the doctor can't or won't order a machine for me.

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[-] JudyBJ +0 points · 4 months ago

CommunicativeGoldFox4076, I also have a pacemaker and AFib, and have a ResMed AirSense10. When I first got it (on Medicare), my pulmonologist set the pressure at maximum (20 lbs.) -- I could not sleep at all and had air bubbles coming into my mouth and also out of the corner of my eye. Neither this doctor nor anyone in his office nor in the equipment place were of any help. The doc said he had never heard of any such thing, but finally, after I sent him some examples I googled off the internet, he re-set the pressure to 10 lbs., and I began sleeping fine. But he was so unhelpful that I switched to a different medical group, had another sleep study done and was re-set to 6 lbs., which also works fine. Apparently, to change the pressure, a doctor has to do it. Ask your primary care doctor to see if he/she can get you another CPAP machine, and lower your pressure until you are able to sleep. After that, you can work on the oxygen matter. You are NOT expecting too much, to have your sleep doctor answer your questions in a prompt manner, especially since you have severe obstructive sleep apnea which is definitely bad for those with atrial fibrillation. Ask your primary care doctor to recommend a better sleep doctor, or if you can just work with him/her, go with that. BTW, are you signed up on the great free forum for those with AFib, StopAfib.org. Lots of Afib help there, and also some on sleep apnea. Hang in there! JudyBj

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[-] CommunicativeGoldFox7046 +0 points · 4 months ago

Thanks so much, JudyBj, for your very helpful suggestions! I'm still waiting to hear from the sleep doctor's office, and also the DME rep who has called the doctor's office for me twice and had to leave messages, which evidently never got a response. I never actually got to see this doctor, since his nurse-practitioner took over the appointment I had scheduled after I gave up on my first sleep doctor (the one my Primary care doctor had referred me to). She canceled the appointment I had scheduled with her after my machine was confiscated for non-compliance, but scheduled me for a re-titration study 5 weeks later (when I had so much trouble sleeping), so I have had no contact with either the new doctor or her since that original appointment. I just read in the Medicare regulations that patients who fail the initial 12-week trial are eligible to requalify for a PAP device, but must have both a face-to-face clinical evaluation by the treating physician to determine the reason for the failure, and a repeat sleep study in a facility-based setting. So it looks like I could be refused since I never had that face-to-face appointment with either the doctor or his CNP. And I was hoping if yet another repeat sleep study is absolutely required, it could be a home study, where I would be far more likely to be able to actually sleep. It is so frustrating that this entire process seems to be more about putting obstacles in the way of the patient actually getting help with the apnea problem! I have seriously considered asking my Primary care doctor if he would order the machine for me, if this doesn't work out with the new sleep doctor, but I'm afraid that Medicare would not cover it under those circumstances, and I would be on my own from now on, which I can't afford. Thanks for the information about the AFib online forum. I will definitely check that out!

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