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Blizzard2014

Blizzard2014
Joined Nov 2016
Blizzard2014
Joined Nov 2016

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.

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

Wiredgeorge. Thanks for the response. I have a few really weird medical situations going on. I might have actually had a blood clot at the time of that first test. I was having a lot of issues and even failed a lung function test with low FEV1 and low DLCO. Since then my FEV1 has went back up to 75 percent of predicted. I don't know if my DLCO is still low though. I'm really struggling with BIPAP compliance. My max pressure setting is 24. Once the machine completely ramps up, I start to choke, or massive amounts of air begin leaking from my face mask. I have the Mirage Quattro full face mask. I was in the hospital for a week when I had the large blood clots in my lungs, but they had me on 02 24/7, so it made my low oxygen not show up. I noticed that I felt much better with the constant 02. I also have diabetes and the Hughes Syndrome, both of those are known for causing headaches. But when my blood sugar is normal (under tight control) and my blood is thinned properly, I attribute the headaches to the sleep apnea and low oxygen levels. Last night I had the mask on for 2 hours. I had an AHI of 9.9. I don't know if the events happened before my pressure level was in full force, or if they happened because of the pressure level. In my last sleep study they wrapped something around my head to help keep the mask on, and they fixed all of my events with a max pressure of 24. I have the ResMed Air Curve 10 ST. It's the last machine they have before they put you onto ASV. There is also some talk about neuromuscular problems; but my restrictive lung pattern is not validated, because I have an elevated TLC. I added that just in case one of the doc's pops in and can offer up any advice. When I finally pushed for a sleep study, about 7 months ago, I was choking myself awake many times a night. I was literally choking within minutes of trying to fall asleep. I was having severe anxiety and insomnia because I was afraid to fall asleep at night. I felt like if I would breathe too deep, I would get air hunger. Then if I would breathe too shallow, I would also get air hunger. I sometimes catch myself not wanting to take a breath after exhaling. It's like I just stay there holding my breath. Any how, thanks for the support.

J

I had a few different sleep studies recently. I have a hard time falling asleep and remaining asleep for these studies. So my doctor performed a couple different ones. Each one had even worse results. My last one had an AHI of 19, with a REM AHI of 30. My lowest oxygen level was 84, and my mean oxygen level is 88. I am under 89 oxygen level for 99 percent of the night. I also have more arousals than actual AHI's. My AHI's are 19 per hour, or 120 for 6 hours, but my arousals are 140. How can I have more arousals than AHI's? Also, if my sats aren't really dropping that low, what is keeping them consistently low? I have had blood clots in the past. I don't have them now; and I have been tested for lung diseases and am all clear, except for maybe some mild COPD. My chest hurts a lot, kind of like it is left over pain from struggling to breathe at night. They also think I might have UARS, but would UARS cause my oxygen to remain so low at night? Most of my events are Hypopneas with just a few actual Apneas. I am so tired all of the time. I am like a narcoleptic. I can sleep for 13 hours and then get up, do a few things, and go right back to sleep; even after pounding coffee and energy drinks. I'm completely immune to coffee and energy drinks. My REM sleep on last study was only 6 minutes for 6 hours worth of total sleep time. I spent 80 percent of my sleep time in stage 2, 11 percent in stage 1, 7 percent in stage 3, zero percent in stage 4, and only 1.8 percent in REM. Does this seem normal to you? I think my apnea is even worse than the 20 events per hour, but I cannot seep with all of those wires on me. If they would have had me hooked up for 13 hours, they would have seen more events. I even had a hard time sleeping when they gave me Ambien. I was wondering is it possible they missed more on the studies? My first study showed an AHI of 6.8, and the second one showed an AHI of 11. Do you think I need to use oxygen at night? Any advice would be greatly appreciated.

I would also like to add that if I do not pound caffeinated drinks, I will fall asleep all day. With the caffeinated drinks, I can stay awake (but it is still kind of like I'm in a dream state) and I can fall asleep if I allow myself. I still have to fight off the sleep with coffee. It has been this way since I was a kid. I have Hughes Syndrome which is an autoimmune disease. I don't know how much this has to do with anything, but it makes a lot of sufferers tired; with brain fog, chronic fatigue, and joint pains. It's kind of like a smaller version of SLE Lupus.