Just got AHI (24), waiting on CPAP

[Pugsy]

BTW...that chunk of large leak...you barely went into large leak territory...it's not enough to impact therapy itself and I didn't see the leak itself actually causing awakenings...appears from the flow rate that you slept right through the big chunk of large leak.

I wouldn't worry about this small amount of large leak (only went to just under 27 L/min) unless I knew it repeatedly woke me up. Mouth breathing possible but also can be simply mask movement.
If you want to know for sure the only way to figure out mouth breathing vs mask movement is taping the mouth shut...and to be honest I don't want to add that to your worry list right now. It will very likely just mess with your already crappy sleep quality even more and it's not bad enough to worry about right now anyway.
Save this chore for later and maybe do that work later if it is determined that it needs to be worked on.
For now anyway...shrug your shoulders and move on.

[zonker]

I'm a CPAP newby, and I've read through this entire thread twice.

welcome to the zoo!

it's good to know that newbies read the other threads. it's a great way to learn.

be sure to start your own thread if you have any questions.

good luck!

[Billymadison420]

Pugsy,

Incredibly generous use of your time. Thank you so much for doing this. It means a lot.

I will talk to my doctors about maybe any other medication at night that could help for sleep. Other than the mirtazipine.

In the meantime my new sleep doctor said this:


“I would give the CPAP a good try for at least a month before we can say there is something else going on like Narcolepsy. Please reschedule your appointment with me for sometime at the end of August and we will discuss at that time. Please sleep for at least 7 hrs every night with your CPAP machine.

RG”

[Pugsy]

In the meantime my new sleep doctor said this:


“I would give the CPAP a good try for at least a month before we can say there is something else going on like Narcolepsy. Please reschedule your appointment with me for sometime at the end of August and we will discuss at that time. Please sleep for at least 7 hrs every night with your CPAP machine.

I know it wasn't what you wanted to hear but he/she is correct.

Order another bottle of patience pills....

Sometimes "giving it time" is what the doctor ordered...you know why? Because often it works out quite well...but it's ugly in between when having to take all those nasty tasting patience pills.
It took me a full two weeks to even remotely have any sort of melding of the minds between my brain and my new cpap routine and even then it was far from what I wanted. And I didn't have other potential diagnoses eating at my brain to cause worry and annoy me or make things worse and I was full on board and wanting cpap to fix my problems.
At two weeks post onset cpap therapy I was just barely starting to see any improvement in anything.
Took me probably 3 full months for my brain to quit waking me up just to alert me to the alien on my face blowing air up my nose.

I have no idea how much time you will need....remember that YMMV sticker? It's on everything.
But the fact that you need some unknown amount of time doesn't surprise me one bit especially with what I think is an underlying problem with spontaneous arousals from some unknown cause.

[Janknitz]

I am late to this party, but something I want to add about "sleep debt". There's a lot of controversy as to whether or not sleep debt is real. My personal perception is that once I started to get good quality sleep with CPAP (and it took a good 3 months to get there!) is that I craved sleep because it felt so good. I couldn't wait to get to bed in the evenings, and in the morning I was reluctant to break that peaceful feeling I awoke with on CPAP (still do). So I was often tired, I think because I craved that good sleep. Over time the craving dissipated, and I was back to my night owl biorhythm. But it still feels good to sleep, especially with my ResMed machine, which doesn't cause the discomforts that the Philips Respironics machine did. Try to really work on getting good quality and quantity of sleep at night. For a while you may really crave sleep, but that's not necessarily a bad thing.

I'm appalled that the first doctor didn't properly test for narcolepsy OR sleep apnea. If you had what was thought to be a history of narcolepsy, a home test was NOT appropriate. You need the full on test with ECG to see what's really going on, as well as the MSLT to rule narcolepsy in or out. Hopefully Dr. #2 will go back to basics, start at square one before throwing medications at you.

And as for caffeine--well, you know. Try cutting back gradually, not all at once. Either by mixing a percentage of decaf into your daily intake, or simply drinking less--use smaller cups if you need to for the psychological effect. You don't want to quit cold turkey because the withdrawal is hard. In my religion we fast totally a few times a year--not even a drop of water is supposed to pass the lips from sundown one day to past sundown the next. During religious services I watched a woman have a seizure from the caffeine withdrawal just because she hadn't had her morning coffee! She must have been some big caffeine addict. After seeing that I taper my caffeine intake down to zero over the few weeks leading up to the fast, and I only have one 12 oz mug of coffee a day anyway. I'm pretty sensitive to caffeine, so if I have any later than noon I know my sleep will be shredded.

So it doesn't mean you necessarily can't have ANY caffeine, but for quality of sleep's sake you do need to bring your consumption down and keep it to earlier in the day. If you do it slowly and gradually it may not be as bad, but some patience pills may be needed for that too. Expect your days to get worse at first but give things time to settle down. One step back, three steps forward.

One other thought occurred to me about the caffeine. Do you put sugar in your coffee, sugary creamer, or always eat something with your coffee (sugary cereal or pastries, for example, or an "energy bar")? Is there a possibility that what you are feeling with daytime sleepiness could be blood sugar drops? If you drink your coffee with sugar, along with the caffeine you get a boost of energy from the sugar. And then, your body secretes insulin to get the glucose you've consumed into your cells. If you are like perhaps 50 - 75% of the population and have any degree of insulin resistance, your blood sugar drops when this happens, and the symptoms you describe are also common with reactive hypoglycemia caused by insulin resistance.

This is not easy to test for. A standard A1C test is an AVERAGE of blood sugars, and it may show in normal range, even if you have this issue. A standard 2 hour glucose tolerance test won't show it either. You will need a 5 hour glucose tolerance test WITH insulin levels to test for this--most doctors don't even know they should order it this way. But if you are ingesting a fair amount of sugar with your caffeine, there's a clue. And sleep apnea, by the way, increases insulin resistance because of it's effect on your hormones. This is why you need a good test for narcolepsy to rule it in or out. And consider whether blood sugar issues may be the cause or a contributing factor as well.

[Billymadison420]

In the meantime my new sleep doctor said this:


“I would give the CPAP a good try for at least a month before we can say there is something else going on like Narcolepsy. Please reschedule your appointment with me for sometime at the end of August and we will discuss at that time. Please sleep for at least 7 hrs every night with your CPAP machine.

I know it wasn't what you wanted to hear but he/she is correct.

Order another bottle of patience pills....

Sometimes "giving it time" is what the doctor ordered...you know why? Because often it works out quite well...but it's ugly in between when having to take all those nasty tasting patience pills.
It took me a full two weeks to even remotely have any sort of melding of the minds between my brain and my new cpap routine and even then it was far from what I wanted. And I didn't have other potential diagnoses eating at my brain to cause worry and annoy me or make things worse and I was full on board and wanting cpap to fix my problems.
At two weeks post onset cpap therapy I was just barely starting to see any improvement in anything.
Took me probably 3 full months for my brain to quit waking me up just to alert me to the alien on my face blowing air up my nose.

I have no idea how much time you will need....remember that YMMV sticker? It's on everything.
But the fact that you need some unknown amount of time doesn't surprise me one bit especially with what I think is an underlying problem with spontaneous arousals from some unknown cause.

Like I said in a private message. I have to admit. Today. And not yesterday but the day before. I do feel better. My blood pressure is back down to normal even in the middle of the day after a coffee. I know I know, I should've drink all the coffee. But I am taking a winwhere I can. I had a decent but more of energy today to do work and run some errands. Feeling grateful for that. And I agree, I am glad the new doctors going back to basics to get this right. She told me not to take any stimulus during the month that I use the CPAP before our next appointment so that she can understand my baseline on CPAP therapy. She is doing things the right way.

[Billymadison420]

I am late to this party, but something I want to add about "sleep debt". There's a lot of controversy as to whether or not sleep debt is real. My personal perception is that once I started to get good quality sleep with CPAP (and it took a good 3 months to get there!) is that I craved sleep because it felt so good. I couldn't wait to get to bed in the evenings, and in the morning I was reluctant to break that peaceful feeling I awoke with on CPAP (still do). So I was often tired, I think because I craved that good sleep. Over time the craving dissipated, and I was back to my night owl biorhythm. But it still feels good to sleep, especially with my ResMed machine, which doesn't cause the discomforts that the Philips Respironics machine did. Try to really work on getting good quality and quantity of sleep at night. For a while you may really crave sleep, but that's not necessarily a bad thing.

I'm appalled that the first doctor didn't properly test for narcolepsy OR sleep apnea. If you had what was thought to be a history of narcolepsy, a home test was NOT appropriate. You need the full on test with ECG to see what's really going on, as well as the MSLT to rule narcolepsy in or out. Hopefully Dr. #2 will go back to basics, start at square one before throwing medications at you.

And as for caffeine--well, you know. Try cutting back gradually, not all at once. Either by mixing a percentage of decaf into your daily intake, or simply drinking less--use smaller cups if you need to for the psychological effect. You don't want to quit cold turkey because the withdrawal is hard. In my religion we fast totally a few times a year--not even a drop of water is supposed to pass the lips from sundown one day to past sundown the next. During religious services I watched a woman have a seizure from the caffeine withdrawal just because she hadn't had her morning coffee! She must have been some big caffeine addict. After seeing that I taper my caffeine intake down to zero over the few weeks leading up to the fast, and I only have one 12 oz mug of coffee a day anyway. I'm pretty sensitive to caffeine, so if I have any later than noon I know my sleep will be shredded.

So it doesn't mean you necessarily can't have ANY caffeine, but for quality of sleep's sake you do need to bring your consumption down and keep it to earlier in the day. If you do it slowly and gradually it may not be as bad, but some patience pills may be needed for that too. Expect your days to get worse at first but give things time to settle down. One step back, three steps forward.

One other thought occurred to me about the caffeine. Do you put sugar in your coffee, sugary creamer, or always eat something with your coffee (sugary cereal or pastries, for example, or an "energy bar")? Is there a possibility that what you are feeling with daytime sleepiness could be blood sugar drops? If you drink your coffee with sugar, along with the caffeine you get a boost of energy from the sugar. And then, your body secretes insulin to get the glucose you've consumed into your cells. If you are like perhaps 50 - 75% of the population and have any degree of insulin resistance, your blood sugar drops when this happens, and the symptoms you describe are also common with reactive hypoglycemia caused by insulin resistance.

This is not easy to test for. A standard A1C test is an AVERAGE of blood sugars, and it may show in normal range, even if you have this issue. A standard 2 hour glucose tolerance test won't show it either. You will need a 5 hour glucose tolerance test WITH insulin levels to test for this--most doctors don't even know they should order it this way. But if you are ingesting a fair amount of sugar with your caffeine, there's a clue. And sleep apnea, by the way, increases insulin resistance because of it's effect on your hormones. This is why you need a good test for narcolepsy to rule it in or out. And consider whether blood sugar issues may be the cause or a contributing factor as well.

If I make coffee at home I generally don't add sugar. But the creamers that I use probably do you have sugar in them, and if I get a latte or mocha. Of course that's probably gonna have sugar in it. So that's a good point. In the past I have had similar issues with hypoglycemia. So that is not a discount. Ratcheting up blood sugar and then having a crash back down is no joke.

I will try to start with going down to one cup in the morning. That's going to be a tremendous challenge with me. I have used coffee to manage fatigue since I was probably 17. I'm 35 now.

Yes the new doctor was kind of an idiot. But what did I know. I can only know that with balancing what I've seen against the new doctor. When I spoke with her, I was immediately taken aback by how smart and in control she was. How response if she was. And how direct she was. Kind of like a really cocky airline pilot. Cocky but that's what you want to fly the plane. I liked her style. The first guy just honestly was kind of a mess.

Like I mentioned to Pugsy, I have to reluctantly admit today I felt pretty good.

[ChicagoGranny]

I will try to start with going down to one cup in the morning.

You said you are drinking two French presses a day. I don't know how many cups this is. You better do a slow taper over several days to avoid a nasty withdrawal headache.

[Billymadison420]

I will try to start with going down to one cup in the morning.

You said you are drinking two French presses a day. I don't know how many cups this is. You better do a slow taper over several days to avoid a nasty withdrawal headache.

Probably like 6 cups. Maybe I’ll go down to 3 to
Tomorrow.

Me: https://youtu.be/YJn5MrBy1A0

[Pugsy]

I am not so sure that your coffee intake is the big bugaboo with your arousals but I do know that you should go down slowly with the coffee/caffeine intake. If you don't you will go into caffeine withdrawal and it won't be pretty.
It wouldn't be impossible for the caffeine to be a factor in the wake ups during the night but I would start slowly with any reduction...maybe a cut off time of 3 pm to start with and small reduction in the amount...then after a few days a little earlier cut off point and maybe another small reduction in amount.

I don't know about other people but when I get caffeine withdrawal I get a massive headache.
I have discovered that as long as I don't drink caffeine after 6 PM then I really don't have any problem with caffeine messing with my sleep. I had some iced tea tonight after 6 PM.....I probably will be cussing it tonight? But it is so frigging hot right now and it tasted so good......

When you wake up in the mornings try not to judge how you feel so much. The sleep aid you take could be possibly causing a bit of a hang over effect for one thing and the other thing is that maybe you just aren't as much of a morning person as you used to be and it's not fair to compare back then to now.
Now me....I have never in my life been a morning person. Originally I was disappointed that using cpap didn't make me into a morning person but then I had to remember that I never have been.
Also remember that we can change as we get older and while we might have been a morning person years ago...we have gotten older and things change.
Try not to compare to way back when....take what you get now and look for positives.
Negatives are easy to find but the positives are there...we just have to sometimes look a bit harder for them.

[Pugsy]

So this was the beginning last sleep session of the night.
Started at 03:41 but solid sleep didn't come until....where the red line is here. Left of the red line...not asleep and to the right...solid sleep breathing at 04:05:30....maybe 4:05:00 but for sure 04:05:30
About 24 minutes... similar amount of time at the very beginning of the night which was 22:46 and asleep at 23:04

Not a horrible sleep onset latency but that's roughly 40 minutes out of the time the machine was used when OP wasn't asleep.
Then you add in the other awakening times...not as much actual sleep as first thought.
There's also a break in therapy beginning at 3:28 and ended at the 03:41 beginning of the last session...not quite another 20 minutes of non sleep. Makes for roughly an hour off that 8 hours and 18 minutes. 7 hours is still a respectable amount of sleep but there were a LOT of arousals during that 7 plus hours.
I suppose I could add up the arousal time frames but too tired and I have a headache from all the spiteful in fighting going on in some other threads and it doesn't really matter anyway.

Overall though for a 3rd night on cpap....actually a decent amount of sleep and I can tell everyone right now it was better than my 3rd night on cpap. I didn't get 7 hours for one thing and I had probably 40 plus arousals as well.

[ozij]

In my religion we fast totally a few times a year--not even a drop of water is supposed to pass the lips from sundown one day to past sundown the next

Same here - and based on the same experience.

I taper my caffeine intake down to zero over the few weeks leading up to the fast

You need patience in the tapering as well. Drop one cup, give it at least 4 days, then drop another.
Do not, repeat, not add the misery of caffeine withdrawal to your other problems.

[Billymadison420]

In my religion we fast totally a few times a year--not even a drop of water is supposed to pass the lips from sundown one day to past sundown the next

Same here - and based on the same experience.

I taper my caffeine intake down to zero over the few weeks leading up to the fast

You need patience in the tapering as well. Drop one cup, give it at least 4 days, then drop another.
Do not, repeat, not add the misery of caffeine withdrawal to your other problems.

Good call!!

[Billymadison420]

Good morning everybody. I’m away from my machine right now working from the office. My apnea index was under one last night again. All central Apnea as they probably were just me being awake. I don’t feel like I slept great. But ironically I still feel better than I normally would. I felt really good yesterday overall actually.

I’ve noticed that my normal IBS issues are somewhat gone. My stomach is smoothed out and I’m having normal movements. Sorry TMI lol. Blood pressure normal consistently now.

I noticed myself fussing with the mask more last night. I think I know why. The nights that I felt like I slept well with it, I had the humidifier set manual to higher temperatures. This would make it easier to sleep for me, but I would wake up at four in the morning with the mask gurgling from too much condensation. When I would go back to sleep I would turn the humidifier back to auto. When it’s on auto I feel like it’s too dry. So I think I need to find a temperature setting that is humid enough for me but also doesn’t result in condensation accumulating up to the point where I wake up with the gurgling sound.

[Pugsy]

Hose air temperature has nothing at all to do with the amount of humidity or moisture the machine is cranking out.
Humidity itself is a totally different setting.
We use hose air temperature to prevent the gurgling you heard...we call it rain out.
Warmer hose air temp will hold onto more moisture and less chance of condensation in the mask or hose from happening.

So you pick a humidity setting that works well for you and then you pick a hose air temperature setting that prevents the condensation.
See this thread posts number 2 and 3.
http://www.cpaptalk.com/viewtopic/t9403 ... -road.html

The "auto" setting for hose temp and/or humidity...works well for a lot of people but it isn't perfect.
It depends on preferred humidity setting and the ambient bedroom air temp....explained in that link above.

If you hear gurgling and/or experience water in the mask or hose....you need more hose air temp and not less because the warmer air will have a better chance of not condensing.
Various other options (again explained in the link above) as well.
I recently added a short hose cozy myself because I was having rain out despite the hose air temps which were maxed out and I hated anyway.

Again....hose air temps aren't humidity settings and changing the hose air temp by itself doesn't change the amount of water the humidifier is cranking out.
Humidity delivered is a different setting apart from hose air temps.

Now those without a heated hose....one setting and it's for humidity to be delivered.
If someone gets rain out and they are using a non heated hose....options for that are also explained in the above link.
No sense in my repeating them.