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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.
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.
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.
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
I might be looking into this and surgery. When I open my mouth, you can't see my tonsils. My tongue almost completely covers my throat. That can be helped with surgery. I wish we could all use a dental appliance and feel better. But it's not always that easy. Good luck with continued success.
Thanks. All good advice. I figured with the nasal pillows it would be easier. There was a guy in my class we had to go to who had the nasal pillows and his pressure was 20. He could not tolerate the face mask because of claustrophobia. I never thought about how hard it would be to try and blow air out of the nasal pillow type masks. It makes sense that it would be quite difficult to do so. I wish this therapy was easier than it is. I wish it was like taking a blood pressure pill, but it's not. I have never had such a hard time with anything other than this mask. I will keep on pushing forward though. My symptoms are bad today. I napped three hours yesterday. Then I had 10 hours of sleep, with two of them being off and on with the mask on. I'm slamming diet mountain dews like crazy just to stay awake. I could probably sleep 3-4 hours right now if I allowed myself. My cognitive function is really bad. I feel like I'm dreaming walking. Thanks for the help.
Thanks for the advice on the masks. I might try the pillow mask, but I heard it can't handle higher pressures. I might be wrong though. Your pressure is 25? That is pretty high as well. I wonder why my pressure is so high when my apnea is considered moderate? I have to keep on trying. I will be trying every night until something gets better. I will also look into something to seal around the mask like you suggested. What happens with me is I swallow a lot because of excess saliva. When I try and pause breathing to swallow when the pressure level is high, the machine forces me to gulp a huge amount of air. I then have to burp and can't burp with the machine trying to do it's thing. I have to stop the machine and then burp and start all over again. Maybe a nose only mask will prevent this. Thanks for the support.
I have a pressure setting of 24 on my ResMed Air Curve 10 ST BIPAP machine. I find it really hard to tolerate this amount of pressure, even with the 45 minute ramp up setting. I wear the machine for up to 2 hours a night before I have to toss the mask off and go back to sleep. I know I need this BIPAP to work for me. I need to fight this in order to feel better. I just get so frustrated at times. I even have Ambien to take and it will not knock me out when the mask is on. Putting that mask on automatically wires me up like I'm on stimulants. I might try taking 2-3 hour naps (well I already take them like this) sitting upright in a chair with the mask on. I will try doing it this way and maybe I can get more acclimated to the machine. When I side sleep, the mask leaks. When I back sleep, I am not always comfortable. But I am used to sleeping upright for hours in a chair. Have any of you ever considered just having the Trech put in? I know they're not going to do it for me, because my case is only moderate/borderline low severe due to having an AHI of 30 in REM sleep. It would be so much easier though. I read that anyone needing a pressure setting higher than 24 needs to be mechanically ventilated. Thanks for the support.
J
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.
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.
