High AHIs-Feel Terrible-Machine Troubles

Guest5180 wrote: Should I really be setting my minimum pressure to 15? That seems really high when half the night is under 13?

I wouldn't. I don't know how much more you need...but I doubt it will be 15 minimum...but even if it did...go up slowly because you never know..you might get lucky and end up not needing as much as originally thought.

Ted was basing that idea on the 90/95% number and I don't hold to that as a minimum because the actual definition is AT OR BELOW...it's not where you were at for 90% of the night.
But some people still think the minimum should be equal to the 90%...I don't hold to that thinking myself because 90% numbers are too easily skewed.

Your leaks are fine. Your machine reports total leak...which includes expected vent rate plus excess leak.
You won't ever see a nice low total leak number. You can't compare your leak numbers to a ResMed users leak numbers.
As long as you aren't getting Large leak flagging (it will show up over on the Events graph...that LL near the top..that's large leak) then I wouldn't worry about leaks unless they are waking you up.
Anything that wakes us up is unwanted and that includes a crazy cat...but I have one of those also...so we deal with it.
We fix what we can and grin and bear what we can't fix.

Leaks aren't affecting the therapy...now if they are waking you up then that's a totally different discussion.

Guest5180 wrote:Also, I do spend 1-3 hours a night on the CPAP but actually awake and not able to sleep - does that make the AHI number actually lower than it really is?

The machine doesn't know if you are awake or asleep. All it measures is flow rate and our awake breathing is very irregular when compared to asleep breathing and it is quite common for the machine to flag awake breathing irregularities by mistake.
If you are seeing even flags during known awake times...those have to be mentally removed from the evaluation process because they aren't asleep flags. In other words a lot of known awake time with mask and machine on can give you a falsely high AHI and really screw up the evaluation process. So, yes...the AHI could be a lot lower and not nearly as scary looking and you might not need much more pressure.

Is this thread you?

viewtopic/t156450/What-am-I-doing-wrong ... -AHIs.html

If it is...let me know and I will put a link in that thread to this thread because it is way too confusing having multiple threads with multiple names, etc.

Guest5180 wrote:Thank you for converting the graphs so they are readable.

The periodic wakeups are from my delightful cat that likes to walk over and scream in my ear every 2 hours for no reason whatsoever.
If I try to close the door, he beats on it like a gorilla and screams all night, and besides I do love the little maniac.
There have been a few nights where he was at the vet or in boarding, and my numbers were still basically the same....

Someone mentioned leaks weren't too bad - I don't know what is bad, but to me they seem sort of bad.

Also, I do spend 1-3 hours a night on the CPAP but actually awake and not able to sleep - does that make the AHI number actually lower than it really is?

I do take a fair amount of medicines, and I try to take most of them no later than 6 at night. The exception is the Klonopin - I only take 0.5 and am trying to wean off. In my sleep study from 5 years ago, they said I have severe leg movement problems and have tried Mirapex and others and the only thing I can tolerate is the Klonopin, but it gives me nightmares.

One thing I found scary was with the Dreamstation. It made me feel like I couldn't breathe and I would wake up about 6 in the morning gasping for breath and heart beating like crazy. One day even called 911 and went to ER - thought I was going to die. Just panic, but it feels weird to me even trying to sleep or any time - it has such a different and relaxed response to everything. I put it away and went back to the Autoset 9 until I decide what to do next.

Should I really be setting my minimum pressure to 15? That seems really high when half the night is under 13?

Anyway, thanks so much for any help. Wish I could have the beautiful, low AHI graphs that some have. Don't think I have ever had under a 5.

You likely can if you work at it.
Simply put, you don't want the minimum pressure set too low because then the machine can't get back up to the necessary pressure in time when needed. If you are going to need 17cm at times, then you want the pressure close enough to get there in time.

As pugsy said, it is best to work your way up to a higher lower pressure over time.

We need to be able to isolated known awake time when it is going to be prolonged so that we can maybe remove known awake time data from the calculations.

If you are awake for a prolonged period of time reach over and turn the machine off and then back on again. This will create a separate session which we can then turn off in SH so it doesn't cloud the results.
We have to be able to know which session is asleep data and which is awake data and the only way is to mark it some way.
We can't rely on the brain remembering time, etc.

Thanks so much for your help. Makes me feel better about the leaks.

I have never set my minimum higher than 10, so I will try increasing that over the next few days. Does anyone else find it interesting that sleep doctors are so inclined to set auto machines with ranges of 4 to 20 thinking that the machine can handle such a wide range properly? And then they get mad if they find out we read the Clinicians manual and got help from other users to try to get everything to work right...

I will try and turn the machine on and off when I am awake for a while.

I'm just going to stay on the Autoset 9 until I can improve things and also start trying (again) other masks. Sure hate to give up my Breeze and have to deal with all the straps on the face, but no choice there.

Then I guess I will have to decide whether to try the Autosense 10 again or some other machine - my Autoset 9 is starting to show signs of age and wear and tear. I'm still afraid to use the Dreamstation anymore - tried it 3 more times and the same scary heart racing/panic woke me up.

I don't have a sleep doctor or DME right now, so I guess I will have to find one so I can get a new machine through insurance (been over 7 years since I used the insurance).

Well, thank you so much for sharing your expertise. So appreciated.

Guest5180 wrote:Thanks so much for your help. Makes me feel better about the leaks.

I have never set my minimum higher than 10, so I will try increasing that over the next few days. Does anyone else find it interesting that sleep doctors are so inclined to set auto machines with ranges of 4 to 20 thinking that the machine can handle such a wide range properly? And then they get mad if they find out we read the Clinicians manual and got help from other users to try to get everything to work right...

I will try and turn the machine on and off when I am awake for a while.

I'm just going to stay on the Autoset 9 until I can improve things and also start trying (again) other masks. Sure hate to give up my Breeze and have to deal with all the straps on the face, but no choice there.

Then I guess I will have to decide whether to try the Autosense 10 again or some other machine - my Autoset 9 is starting to show signs of age and wear and tear. I'm still afraid to use the Dreamstation anymore - tried it 3 more times and the same scary heart racing/panic woke me up.

I don't have a sleep doctor or DME right now, so I guess I will have to find one so I can get a new machine through insurance (been over 7 years since I used the insurance).

Well, thank you so much for sharing your expertise. So appreciated.

Once you get your lower pressure set correctly, all of your machines should be fine. The reason you reacted poorly to the dreamstation is because the pressure went all the way down to the minimum setting (9cm) which is too low for you and I have been told that the PR machines respond less aggressively to needs than the Resmed machines. The other machine never went that low. Different algorithms. That is why you want your settings to be close to where your needs are. The algorithms are not perfect for everyone so that is why some user guidance on settings is very useful.
Please keep us updated.

Guest5180 wrote:Sorry, I was not demanding an answer - just noticed there were a lot of views and no comments and wondering if I was doing something wrong.

many of those "views" are indexers crawling the site for things like google, bing, duckduckgo, yandex, etc.

Please let me know if I should start a new thread for posting my efforts to improve my sleep.

I increased my minimum pressure last night to 10 from 9 - kept an EPR of 1 - used the Autoset 9.

On the surface looks like a better night with lower AHI, but it was a really scary night. I am having serious trouble with burning legs and feet going numb and seeing various confused doctors about that, so I was awake off and on panicked about how much pain I was in. I woke up suddenly near 5 in the morning and was having a panic attack - took a low dose of Xanax and fell asleep later.

I have noticed with the old Autoset 9 I wake up with a partially closed nose from dryness (humidifier is failing) so that doesn't help. Now that I know more about the different way the Dreamstation works, I may try it again tonight and set the minimum pressure higher. I actually have too much rainout with it and need to figure out how to reduce that - have heated hose/set on auto/wrapped hose, etc. but there may be a setting I have to adjust?

This was still with the Breeze pillows, and tonight I will try one of the other nasal pillow masks I am trying under return insurance.

Graph below - Note - a registered user has to reformat it to change the (dot) to a . Thanks for any comments or suggestions.

https://imgur (dot) com/FriWs7Y (convert (dot) to a . )

Fixed the link for you
https://imgur.com/FriWs7Y

Next time (no need to redo this report)...omit the snore graph and include the Flow Limitation graph in its place.
The snore graph doesn't really help us and the FL graph might.

Your AHI last night...not quite half of it was central and pressure increases won't fix those and you had a bad night from stuff unrelated to sleep apnea which clouds the evaluation. Brings the obstructive index down to just a little above 2 which is decent enough. We don't go changing a bunch of stuff based on one night results unless the results are horrible...and you didn't sleep well for various reasons and some of the flagged events could be Sleep/Wake/Junk (SWJ) and not real anyway.

Continue with the current pressure settings that you used last night and let's see what tonight brings.

I have attached the graph from what I lovingly call the night from hell. Tried the DreamStation again and for some reason, I feel like I am going to die when I use this machine. Started the night at 10.5 and started trying alternative masks. Tried the P10 Pillows first-wasn't getting enough air. Then the Swift FX Pillows-couldn't stop fighting with the hose. Then the Exon Nasal-ok fit but couldn't deal with the hose. I'm going to have an uphill problem with switching from the Breeze. I did try to route the hose overhead with the FX, but it was affecting the seal no matter what I did. At about 4:30, gave up, put the Breeze back on, turned the pressure back to 9.5, and I guess got some sleep. Here's my problems/questions.

I am almost positive, at least sometime after about 7 most mornings, I am doing some heavy mouth breathing, just based on how I wake up. Mouth and nose completely dry, gasping for air, completely convinced I am going to die any minute. Not fun. Now dread going to sleep and stay in a panic off and on all night when I wake up briefly. I guess based on other comments, I should try a chin strap or my least favorite, a full face mask.

I'm feeling like the Dreamstation and I will never get along - looking at some of the results, that may not be the case, but all this fear and panic and mess started when I started using it. It may not be true, but the air flow feels strangely different than the ResMeds I have always used - I'm either wondering where the air is or why it is blowing so hard and at the wrong time. Other people seem to be fine with it, but each time I try it, I get more afraid and panicked. Dumb, but that's what is happening.

I can't figure out why my AHI's aren't 40 or something based on my sleep experience and how I feel, and the war I feel like I am fighting all night. I found a sleep doctor and am able to see her next week and maybe can get some help with masks/fitting/type etc and probably order an Autosense 10 through insurance. In the meantime I am just going to use the Autoset 9 since my fear is less with that one.

On past days, my AHIs always jump pretty dramatically the last hour or two, and I have been trying to get some sleep over 8-10 hours since I have trouble falling asleep. I think I may need to just set the alarm and get up at 8 instead of 9:30 or 10, and adjust my time in bed. Because I sleep later, I am not tired when I try to go to sleep and it just adds to the anxiety of trying to get settled. Plus I really don't like to sleep that late - just sort of gotten into the habit.

Opinion needed on whether to get another sleep study since she will probably suggest it. My last one was 6 years ago, and like many, I only "sleep" about 3 hours, and then they make all their decisions on what is not a representative night at all. Especially for a person that doesn't really fall asleep until early morning, they would wake me up about 5:30, and it just didn't make any sense other than to get your initial diagnosis of having apneas. But maybe it would be useful to see if my oxygen level is really low, or especially if I may have evolved to needing a bipap or asv machine?

Graph below - I don't really see a Flow Limitation graph? Maybe I have something set wrong in Sleepyhead or DreamStation doesn't show that? So I included the AHI graph which shows the spike in AHIs the hour or so before I wake up - this is consistent for the last few years.

https://imgur (dot) com/0YLOrgq (Note - please change the (dot) to a . - forum registration not complete so can't post link)

I show the night before using the Autoset 9 and replaced the Snore with the Flow Limitation.

https://imgur (dot) com/glqcFwa

Respironics machine don't do a Flow limitation graph like the ResMed machines. Instead they flag any FLs up on the Events graph. See the FL...that's flow limitations.
Also Respironics only flags FLs in auto adjusting mode. In fixed mode they turned FL flagging off. Kinda stupid I think but they didn't ask me what I thought about it.

Don't need snore graph or AHI graph. Omit those and just make the other graphs a little larger and easier to read. No need to redo these though.

Fixed this link for you

https://imgur.com/0YLOrgq Sept 5

For some reason I can't fix the other one. I keep trying but it won't work.

The Resprionics apap algorithm is different from the ResMed algorithm. I don't know why you are having so much difficulty with the perceived pressure though..they are essentially the same. Technically they should feel the same but obviously you aren't feeling that way. The ResMed is increasing the pressure faster and staying up there higher than the Respironics ...not unexpected as the ResMed algorithm is known to be more aggressive. For some reason you need a higher minimum to give the Respironics machine a better head start.

I do have a suggestion if you want to try the DreamStation again...set the minimum to 10. Let's see if it cleans up the clutter (stuff not included in the AHI but pointing to airway trying to collapse) and probably will reduce the AHI also.

I am sorry..I assume the other report was a ResMed report and I couldn't get it to work for me. I can do the dot thing and if I copy/paste this glqcFwa into the url path it should work but it doesn't.

Thank you Pugsy. I am trying the dreamstation again tonight and will set the minimum to 10. I found a Simplus full face mask I had bought some time ago and I'm going to try it. Been talking to myself all day and working on a more positive and relaxed attitude about sleep and trying new masks. No need to get myself all in a defeatist panic about it all. You have helped me with your calm one step at a time suggestions. You provide so many with thoughtful and helpful ideas. Here's to a good night of restful peaceful sleep.

Guest5180 wrote: The exception is the Klonopin - I only take 0.5 and am trying to wean off. In my sleep study from 5 years ago, they said I have severe leg movement problems and have tried Mirapex and others and the only thing I can tolerate is the Klonopin, but it gives me nightmares.

In the event your doctor suggests another sleep study, I would suggest that you try to have already arrived at an effective pressure and settled in to a mask that works for you. Fighting an ill-functioning mask setup wastes precious study time. I deal with limb movements and OSA, and found over the years that following the usual course of action is not the best plan for those with limb movements complicating their sleep issues. Another study without CPAP followed by a 2nd study with CPAP will just give you more of the same results. What you need to know is what your legs are doing while on therapeutic CPAP treatment. I would ask the doctor if they are willing to test you while using CPAP at your proven effective pressure. It may be that CPAP is getting blamed for your poor sleep when the legs bear some of the responsibility. I would also have the doctor order a ferritin level. Your result should be up around 100. People with limb movements of sleep need to achieve and maintain a higher ferritin level than the general population. While you're at it, have your Vitamin D and B12 checked - anything associated with muscle and nerve function.

Great suggestions - thank you. I have been told I have just awful leg movements and the Klonopin has not really controlled it. But I had too many side effects with Mirapex, etc. I will get my labs done before the study. I do know my ferritin level is just barely normal, not even mid-range.

I am trying different masks each night trying to find something that might work, since I have to stop using the Breeze.

I still question how much I may be mouth breathing. Last night I tried 2 different full face masks, and while they felt reasonably comfortable, I just don't see how people keep them from leaking all over the place. I was laughing the whole time because air was coming out everywhere no matter how moderate or tightly I strapped them down. If I ever got it to stop leaking, the minute I turned my head an inch, the air would be going everywhere again. When I tried to breathe through my mouth, my cheeks blew up like a chipmunk. Since I do turn all night, I think I will just use a nasal mask and then add a chin strap if necessary. I sense I am no longer getting enough air with pillows - have gained a lot of weight and face is very swollen from being on steroids for over 5 years.

Last night was weird, though. Used the dream station again - 10-17, and after giving up on the full face masks, used a F&P nasal mask. I had the machine set to auto humidity, and all night I had to shake out a lot of rainout about every 2 hours. Woke up about 7 with the most horrible headache ever - wondered if I was having a stroke or something (I am 66). I have never had that happen. I know it sounds ridiculous, but I am really afraid of the dream station now. 2 Weeks ago, ended up the ER after waking panicked and thinking I was having a heart attack. And now last night. I think I am going back to and stay on ResMed machines. Also I noticed that I stay on higher pressures longer with the dream station than the autoset 9 or air sense 10. Also wonder if maybe I should not be trying to raise the lower pressure so much.

Again, thank you for your suggestions. I am working very hard to do what you suggest - find a mask that works ok with a pressure range that works pretty well (I have really never gotten below about 5 AHI and usually average about 7). Then maybe a sleep study can show what may be going on in terms of leg problems, oxygen, mouth breathing, etc.

I'm just not feeling that the machines should have such a difference in effectiveness. I would think it's likely more about the settings, but I am going to defer to the data gurus here on that. Hoping your data will hold some clues that can get you to a better place with treatment. When one is fighting limb movements with accompanying frequent arousals, I'm just not sure how reliable the AHI is. Maybe your AHI is not really so bad. That should be able to be differentiated on a sleep study. You can do some reading about it, but when both OSA and periodic limb movements are present, they can mask each other. To get past this, one of the disorders needs to be controlled before you can see how bad the other really is. Otherwise sleep studies are just watching them play their cat-and-mouse game. Do yourself a favor and fix your known issue of lower than recommended ferritin. It is thought that those with lower ferritin are more prone to problems on meds like Mirapex. Get yourself to a healthy place. It could make a difference in whether you are able in the future to use a dopmine agonist or not. Current thinking on these meds is to keep the dose low. In prior years they kept increasing the dose which caused more trouble than it fixed. It caused augmentation for me. (There's a link to my sleep video in my signature.) After years on various meds. I am now controlling my legs by using a TENS Unit before sleep. Good luck figuring out what will work for you. But getting yourself to a healthy baseline with the things mentioned prior will be the best thing you can do for yourself. Wouldn't it be a shame to suffer when addressing deficiencies could be enough to make your sleep better? When at your personal best you will have a clearer picture of what movements remain and how much they merit further treatment.