Forum · How serious is my condition if I can't tolerate BIPAP therapy?

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[-] Blizzard2014 +0 points · 3 months ago

Hey, I was wondering what my prognosis is if I can't tolerate BIPAP therapy? I am about 20 days away from having the insurance company take my machine away and my doctor will not prescribe me any meds to help me sleep with the mask o despite repeated requests. All he wants to do is another sleep study since I lost 30 pounds. I feel like my sleep doctor is more interested in making money off of me than he is in treating me. I am tired all of the time and he won't help with that. Insurance will not pay for a pillow mask and the doctor only lowered the pressure on my machine to see if that will help when that is not the problem. I can't sleep with the mask on no matter how many times I try. This happens even when I use the ramp up feature. I have anxiety and can't get used to the mask over my face. I am thinking about calling the medical supplier and having them come by and pick the machine up and discontinuing treatment as they aren't even willing to work with me. I think an anxiety med will allow me to sleep for at least the minimum of 4 hours a night with the mask on, but the doc does not agree. Any how, I'm posting a pic of my titration study just to see if you guys think my case is severe. The doc says it is severe since my pressures are 20/24. I also had good oxygen on the titration test, but normally 99 percent of my sleep time is spent between 82 and 88 oxygen levels. Thanks for your advice.

I can't post an image, so here are my numbers.

12 central sleep apneas, mean duration 20 seconds.

22 obstructive apneas ranging 18 seconds in duration.

109 hypopneas ranging 28 minutes in duration.

81 percent in stage 2 sleep.

2.8 percent in REM sleep.

.8 percent in stage 4 sleep.

15 percent in stage 1 sleep.

18 percent was spent in stage wake.

I slept for 360 minutes.

AHI Nrem 20

AHI REM 30

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[-] Blizzard2014 +0 points · 3 months ago

I have a separate medical issue that is causing the weight loss. I am still overweight, but more weight is coming off due to not being able to eat a lot of food. I can barely get down 1000 calories on most days. All of your advice is greatly appreciated.

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[-] wiredgeorge +0 points · 3 months ago Sleep Commentator

I am pretty sure that a pillow mask will be difficult with the pressures you have been prescribed with. You do seem to require PAP therapy based on the info you gave and can't say if 30 lb weight loss would require another sleep study but if your doctor thinks so, perhaps that is the best way to fix you tiredness. The mask issue is a separate issue. Why can't you tolerate therapy? If you can't tolerate the mask you have, you might want to talk about which type mask you do have and if it fits properly based on measured leak rate. Often, a leaking mask will keep anyone from going to sleep. If you just can't tolerate PAP therapy, has there been a discussion of alternative treatment types?

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[-] DanM +0 points · 2 months ago Sleep Commentator

Hi Blizzard. It does appear that you have pretty significant sleep apnea, and there is a lot of data out there about how sleep apnea contributes to other health conditions. Have you considered seeking a second opinion for your anxiety and/or sleep problems? It is difficult to say what a prognosis would be without therapy, but I suspect you would certainly be better off if your condition is treated. Have you attempted to just wear the mask while you are awake and watching television? For some, myself included, this helped tremendously. I started wearing my treatment in the evenings in my living room while watching television. When I went to bed, I was better adjusted to the feeling of the mask on my face and air pressure. Some medications for sleep actually cause more muscle relaxation and can worsen sleep apnea, but it is possible that something to help with your anxiety might be beneficial. Best wishes, and please keep us posted on your progress!

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[-] Blizzard2014 +0 points · 2 months ago

Thanks for the advice DanM and Wiredgeorge. I think my apnea is even worse than what has been recorded as I only really slept on the titration study. I did not sleep well on the other two tests. If they monitored me for 12 hours. I sometimes sleep 12 hours, they would record a much higher AHI. I have the Quattro Mirage full face mask. It's not the leaks that keep me awake, it's the rhythm of the machine. If I try and swallow, the machine stops and then forces air down my throat. I have a lot of saliva and swallow a lot. It is hard to rest knowing another breath is coming. It wires me up to the point that I can't get to sleep at all. I am also a side sleeper and that does not help. I know I need the machine. I just can't force myself to use it. They don't do alternative treatments where I go. They said I would have to go to an ENT for that. I might look into it as my tongue covers my entire throat. I have had these sleep issues even when I was skinny. My sleep tech who gave me the machine told me that I gained weight and got diabetes because of undiagnosed apnea. I have been severely sleep deprived since I was a teenager. I used to work all day and then come home and sleep for hours. I would also sleep all day on my days off. If I want to stay awake, I have to drink tons of coffee. I really appreciate the advice.

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[-] wiredgeorge +0 points · 2 months ago Sleep Commentator

Before I did PAP therapy, I was a side sleeper. Since starting therapy, I am mostly a back sleeper and don't move through the night. Occassionally I roll onto my side early in the AM but still sleep mostly on my back. I got into this habit as I used a Simplus mask and I just couldn't sleep on my side with that thing on or it would be knocked off a bit on my side. I now use a Amara View mask and could sleep on my side if I liked as that mask is full face but much less obtrusive as the mask fits under your nose without a large plastic piece bracing the mask and much lighter. I also seldom sleep more than 6 hours as that amount of sleep is more than adequate. I have slept 7 hours twice in the past two months and those were on Friday nights when I could sleep in a bit on a Saturday. I have been told this isn't normal but I feel great after about 5 1/2 hours sleep. and pretty good with 5 hours. Guess it is quality over quantity in my case.

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[-] BrightSpringbudSandpiper5105 +0 points · 2 months ago

I use a Quattro Mirage when my nose is blocked and a mirage active LT when I am not. Anxiety over the mask itself is a tough one to solve. Getting used to it whilst being awake is a great suggestion. I agree that the higher the pressure the less useful a nasal mask will be and I suspect a pillow mask would be useless at those pressure. Nasal masks can cause you to open your mouth and air flows through. I just can't use pillow masks my nose gets blocked and I knock them off or end up breathing through my mouth.

Maybe lying on your back would make the full face mask easier to take. I am still mostly a side sleeper but I have trained myself to lie on my back if and when I need to. I used to be almost front on (a bit twisted) but I first changed my sleeping angles because I started to get back issues (not because of apnea). Putting a pillow between your legs stops you from turning over and keeps you more or less straight on your side. I find that putting a pillow under my knees keeps me on my back.

We get almost no insurance support here in Australia for Apnea machines and masks and they cost twice as much as in the US.

Try your best blizzard, and good luck. Hope you can train yourself to accept the full face mask sounds like you need it to make headway.

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[-] wiredgeorge +0 points · 2 months ago Sleep Commentator

I can say that when I started sleeping entirely on my back, my lower back would scream with pain. i got a wedge shaped pillow and put my regular pillow on it to elevate my head about 6 inches and no more back issues. Wish you the best of luck and ask you keep us apprised of your therapy results.

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[-] KindPinkGuanaco9781 +0 points · 2 months ago

Newbie here; I also just ordered a side pillow based on recommendations here. Hope it works as well for me as for others here.

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[-] DanM +0 points · 2 months ago Sleep Commentator

Welcome, KindPinkGuanaco9781. Please let us know how the side pillow works for you. I've been interested to try one but just haven't done it.

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[-] wiredgeorge +0 points · 2 months ago Sleep Commentator

Hope it does. there are soooo many variations from individual to individual, sometimes it just takes trying various things to find out what works for you. I am convinced that most folks will find there way as far as equipement and tolerance of the equipment if they just stick to it and stay positive!

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[-] EnthusiasticPurpleKouprey1543 +0 points · 2 months ago

Are you a mouth breather. If so you will need a full face mask. I tried many and the best one is the Resmed Airfit 20. It is light and gets a good seal. You can sleep on the side with it or on your back. I was using the Quatro Mirage mask but it was heavy and uncomfortable and if you sleep on the side and the mask moves it will leak and if you are on a automatic machine, the pressure will rev up quickly and give you more pressure than what you need because it sensing you need more pressure. This will wake you up.. I did not know this and thought my CPAP was defective and I purchased the top of the line Resmed Aircurve Auto 10 which is both a bipap/cpap and paid $1700 and only used 4 hours and now no use for it and collecting dust. I still use the Resmed Autosense 10 which is a great machine. The numbers you gave appears that you need a CPAP and not a BIPAP. A BIPAP gives two types of pressure and it may be disrupting your sleep. You need to speak with a CPAP tech or go through other forums. I had the anxiety you had and slept no more than 2 to 3 hours per night for weeks.I had to stop work for 3 months. You can't stop the therapy or your going to get high blood pressure, cause heart damage, get cramps and feel bad every day. I know because I stop using it and almost went to the hospital on a couple occasion. My pulmonary doctor told me to work out 3 hours before I go to bed. Go to the Gym and work out, or work out at home. Get that TV insanity video. Take Melotonin and take a warm shower. If you like Milk, drink warm milk. You got to figure out how long it takes to doze off and then set the ramp for that time. Set the pressure from 4 to 11 on Auto mode. Get a heated hose if the air is too cold. Adjust the temperature to your liking. Make sure you track your results on Sleepy head software you download from your memory card on your machine and check what your average pressure is and then you can adjust the machine accordingly. The key is getting the right mask and don't put it on too tight but tight enough where it will not leak. If you are not a mouth breather than get a nose pillow mask. After a while you will get use to it and you will eventually sleep 5 to 6 hours a sleep. Even sleeping with it for 4 hours per day will make a big difference in how you feel. If the cause of sleep apnea is due to weight, lose the weight but slowly. I went from an all meat diet to a Vegetarian/Vegan diet with occasional baked fish. I lost 50 lbs. I took RNA (Ribo nucleac Acid) which I was told will help with your Apnea. If you loose the weight, you will see your AHI and Hypopnea go down and once diminish you can get off machine. I know because I am almost there. Good Luck

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[-] Blizzard2014 +0 points · 2 months ago

Thanks for all of the advice. I have had a rough two days with sleeping for up to 15 hours a night and still too tired to function. But once I put the darn mask on, I am wired up. I have these weird sleep windows where I am deathly tired and just knock out instantly. But if I do not knock out during these times, it then can turn into insomnia where I am wired up, and that is what the BIPAP machine does to me. Just like every sleep study, I can't sleep. The only way to sleep is to take two pain pills and mix them with a double dose of Nyquil. Then I can knock out for at least six hours. The only problem with this is the Nyquil is not good for high blood pressure. I already have extremely high blood pressure. It only happens when I am standing up thought. My blood pressure is 117/76 when I stay sitting down. When I stand up, my heart rate goes to 120 BPM and my blood pressure goes as high as 150/120. My heart rate can go as high as 150-190 beats per minute with oxygen dipping into the low 90's depending on how fast I move. I just sit back down when this happens. I had to stop my BP meds, because they were lowering my BP too low when sitting. With the BP meds, my BP would never go above 120/90 when standing and working, but it would go down to 80/90 over 50/60 when sitting down. I can't figure out why my BP is only high when I stand up. One doctor told me that a HR of 120 BPM and a BP of 150/100 when standing was completely normal and a sign of a good healthy strong heart. I know that's not normal, but it is fine when I sit down. I also have exercise intolerance because of COPD and a damaged leg. I can't exercise my legs or else I will be immobilized. Just 10 leg squats is enough to leave my bad leg so sore for a week that I can't even walk up the stairs. It completely immobilizes me. I have a bunch of medical issues to work around. I used to be able to unload 53 foot tractor trailers as a truck driver 5 years ago, but it has all gone to hell since I was hospitalized for blood clots in my leg and lungs. A work related fall caused all of this and now the illnesses are beginning to stack up like corkwood. I know I need to figure out how to use this machine, and I also know it's going to take more than three months to work this out. I have turned the machine back in as my doc does not seem too interested in helping me become compliant. I also cancelled the next sleep study for now. Once my weight stabilizes, I will set up another study. The doc said they can then order another machine and request another 3 month trial period. I will wait for this, or possibly buy a machine on my own with my credit card. I had to do the same thing to get a home INR tester for my blood clotting disorders. It cost a lot of money. If I buy my own CPAP machine, it will be mine. It's strange that insurance companies will not work with people to become compliant when not using the machine means they will have to dole out thousands in treatments and medications from all of the diseases that untreated sleep apnea can cause. It seems like paying 1700 dollars for a CPAP machine would actually save them money in the long run. I guess they don't think this way. Thanks for the advice. I will look into the new mask and buying a new or used BIPAP machine on my own dime by the end of the year. I already have a script. I just need a machine and then to take my time on my own time without an insurance company breathing down my neck and make the therapy work for me. After all, our sleep apnea isn't going to leave us any time soon, so this is a lifestyle change, not a race to see who can make it to the finish line faster.

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[-] DanM +0 points · 2 months ago Sleep Commentator

Hi Blizzard. You have a great attitude, and I admire your persistence! Glad to hear that you are going to continue to try to treat your sleep apnea, but I'm sorry the issues with insurance and the inability to adjust to your treatment have caused you to turn in the machine. I agree that it takes some patient much more time to adjust than a few months. Best wishes as you continue your journey, and please keep us posted!

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[-] ImpartialVioletRhinoceros2234 +0 points · 2 months ago

Hi BLizzard, I don't have many of the issues you have, but I never adjusted well to my CPAP. I eventually got a BiPAP and found that the only thing I could use were the nasal pillows. I am not claustrophobic but the masks just drove me crazy. I also don't need as high a pressure as you need. But you might want to try the pillows at a lower pressure, just to get you accustomed to them, and then work your way up to whatever mask and pressures you need. For me, it has been a very difficult experience. The machine helped for a while, but not very much, and not for long. I'm still persisting, however reluctantly. I have a friend who says it changed his life: he wakes up feeling really great, hardly needs any sleep, etc etc. Not me, but I'm still hoping for something better. Good luck.

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