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Sleep study question

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Blizzard2014 +0 points · over 7 years ago Original Poster

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.

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wiredgeorge +0 points · over 7 years ago Sleep Enthusiast

Welcome. You have a complicated situation. Sort of like a tire pressure monitoring system on your car reporting you have low pressure BUT when you measure the air pressure in each tire it gives you different readings. How are you supposed to know how much air to add? The lack of deep sleep is obviously a big factor in your daytime tiredness as is the poor blood oxygen. A medical professional will have to determine if you have UARS but your symptoms seem to indicate that might be an issue. The compounding of your medical situation with the other issues certainly means that you will have to dig further to find therapy that eases the drowsiness and low blood O2 saturation problems. Keep talking to your doctor (PCP) and sleep doctor and perhaps further sleep study testing can get a more consistent picture of where you are.

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Blizzard2014 +0 points · over 7 years ago Original Poster

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

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wiredgeorge +0 points · over 7 years ago Sleep Enthusiast

There are so many issues here that I once again think it is time to make your doc(s) earn their keep. I can't say much except there are only three reasons a mask will leak like your mask does:

  1. You are bumping it around and it loses seal
  2. Your mouth is ending up OUTSIDE the lower edge of the mask (my downfall for a year)
  3. The mask isn't fitted correctly. (I started with a medium sized cushion and my masked leaked around the bridge of my nose BADLY and I also have my jaw slip out the bottom of the mask as I relaxed. I cured this by using mask pads and an MMA mouthguard. I later figured out that by going to a SMALL cushion, I could dispense with the mask pads and the MMA mouthguard kept my mouth shut.

A sign of leaking through the mouth is that your water reservoir goes dry very quickly regardless of the level it is set to. I don't much care if mine is on or off now and leave it on 3 setting. If I fill it, it has enough water in the reservoir for 3 or 4 nights and I honestly can't tell a difference if is is on or off. My pressure setting is 25/21 on the same machine and I have the ramp set to 5 minutes and could easily turn it off as I am asleep by the end of the 5 minutes. I enjoy high pressure as it allows me to breathe easily through my nose where without therapy, my nose is stuffed a lot. Pressure keeps it open and I think this may be the thin bridge of the nose as the cause.

Anyway, as far as the medical issues compounding the problems you have, I can't speak to that but as for the mask leak, well, I think I have come along way in this regard and can same something helpful. Don't be afraid to try another mask and learn how to keep that jaw from dropping!

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