Can someone look at my Sleepyhead results?

[musicfreak]

Hi everyone,

I just did a CPAP trial using a Airsense 10 Autoset Just for Her. It was programed for between 5-8.

My doctor has diagnosed me with UARS. This trial showed I had low AHI and no 0 RERA's. I thought because I had 0 RERA's that I didn't have UARS. The nurse at the sleep clinic didn't think I had it either and wanted my family doctor to send me to a sleep lab to possibly see if I have a movement disorder. Instead she sends me to the respirologist but he thinks I have UARS still and is more interested in Flow Limitations which has always been a problem for me. My previous trial I didn't feel any better so thought I didn't have UARS but now my respirologist says the pressure should have been increased. He never told me this before and no nurses I've ever worked with have known to either.

The data on the machine says I went up to 6.7 at 95% but Sleepyhead says 8. My doctor wants me to do 7 on regular CPAP and if no difference he wants to increase it. (I've done 7.5 before and didn't feel better).

What do you think of me switching to regular CPAP? He says no studies show the auto machine is better.

Is it true the auto machines pick up flow limitations more than regular CPAP?

Do you think the flow limitations below are that bad? (My doctor wants me to do an Apnea Link test as he relies on that for Flow Limitations).

I am very fatigued all the time. I feel like I sleep fine but wake up very tired.

Thanks,

Cheryl

[palerider]

The max pressure is too low, settings of 8-20 would be more appropriate.

[sleepy-programmer]

For five hours your APAP was consistently at max value. That looks like reason enough to try a higher pressure than 8.

[palerider]

For five hours your APAP was consistently at max value. That looks like reason enough to try a higher pressure than 8.

Well, yes, but the reason it stuck at 8 and never tried to go back down is because the autoset for her algorithm said "whoops, you've had too many events in too short a time, your minimum pressure is *obviously* too low, so we'll set a new, higher minimum pressure." Unfortunately, because of the stupid settings the doctor chose, the machine ran smack into a wall at 8.

[kteague]

The nurse at the sleep clinic didn't think I had it either and wanted my family doctor to send me to a sleep lab to possibly see if I have a movement disorder... I am very fatigued all the time. I feel like I sleep fine but wake up very tired.

After you have your settings optimized for a while, if things don'tstart to get better, talk to your doctor again about getting an in-lab sleep study. By talk I mean try to be insistent. If you convince them, make sure they write the order to include wiring your legs. Is there a reason you think you may have limb movements or is that just a last ditch desperation guess? You could set up a camera to record yourself sleeping to see if your legs are moving. Are you on any meds that could cause fatigue?

[musicfreak]

Thank you everyone for your replies.

@Palerider It was the nurse that set the machine from 5-8. My prescription said 6-12. I think the nurse thought I didn't have UARS because I had 0 RERAS. I'm finding that nurses at these sleep clinics don't have a clue how to treat UARS. I know that's not a surprise to a lot of people.

@Kteague I guess it's kinda a last ditch effort to see if a movement disorder is a cause for my fatigue but I've thought about it before. The nurse wondered if I had a movement disorder because I had 0 RERAS. I did take a video but it's time lapse. From time lapse it looks like something's going on but I'm not sure. My respirologist didn't think so because my heart beat didn't seem like I did. After that I took a regular video. I skimmed it and there is movement in my toes but it may just be normal. I also just skimmed the vid so I probably have missed out some things. In time lapse it looked like I was jerking my legs but maybe time lapse just made it look like that.

I'm only on thyroid medication. I have thoroughly checked out thyroid issues and feel like I'm being properly treated. I take natural thyroid med.

Is it true an auto machine picks up flow limitations more than standard CPAP?

This time around my doctor has suggested I use standard CPAP instead of auto. I'm going to do as he says but I always heard auto or Bipap was best for UARS. Guess if I feel no difference I'll demand to do the higher pressure with an auto machine.

I've been suffering pain and fatigue among other issues for 35 years. Finally in 2008 I was diagnosed with UARS because of increased heart rate and flow limitations. Long story short I've done a couple trials but never succeeded because my respirologist never told me to increase the pressure (til now) and any nurses I worked with at the clinics thought I didn't have a sleep disorder and didn't know to increase the pressure. I figure they should know what they're doing so didn't question it. So years of going back and forth and giving up for a while thinking I didn't have it and trying other things to get better, plus battling Social Services to get a trials (took over a year each time with appeals) now lands me here 11 years later and I'm still not properly treated.

I'm really frustrated as I've been sick for 35 years. I always wondered if I had a sleep disorder but figured I must not if no doctor has even questioned my sleep. It was me in 2008 as a last ditch effort to get checked out but was always referred to the respirologist partly because the waiting list for the sleep lab is long. There were sleep doctors who analyzed my at home tests saying I didn't have a sleep disorder. And then my respirologist and nurses not treating me adequately. It shouldn't be this difficult!

Thanks,

Cheryl

[palerider]

Thank you everyone for your replies.

@Palerider It was the nurse that set the machine from 5-8. My prescription said 6-12. I think the nurse thought I didn't have UARS because I had 0 RERAS. I'm finding that nurses at these sleep clinics don't have a clue how to treat UARS. I know that's not a surprise to a lot of people.

Well, the data says you need more pressure, If you're comfortable changing it yourself, we can find what you need much faster than relying on nurses that take it upon themselves to alter prescriptions. (that's a nono, i believe.).

[kteague]

After that I took a regular video. I skimmed it and there is movement in my toes but it may just be normal. I also just skimmed the vid so I probably have missed out some things. In time lapse it looked like I was jerking my legs but maybe time lapse just made it look like that.

Some people's PLMD consists of no more than a flexion of the big toe or maybe a tightening and release of the foot or lower leg. If the movements are repetitive in appearance and timing is what you would be looking for to be suspicious of PLMD. Hard to get the timing aspect on a time lapse video unless it is time stamped somehow, but you could tell if the movements appear similar once they set in.