Not sleeping.

[Streaming Bob]

I have been on BiPAP since 13 April. This Monday I changed DME and have a new mask that works and fits better. I stop taking over the counter sleeping pill and no longer have dry mouth. I slept 4 or so hours and can't go back to sleep for an hour of so.

Saw the sleep Dr. Thur and he wants me to at least sleep 6 hours with out waking so he prescribed some sleeping pills. I took the first one last night and woke up every two hours, but did not have and problems going back to sleep. Dr. said to call him this coming Tue. and report.

Before I start this BiPAP thing
Slept good 10PM to 6:30 PM
Rested
Excellent Blood Pressure
No sign of heart problems

After being on the BiPAP
Wake up every 2 to 4 hours
tried all the time
Don't Know
Don't Know

Still don't know how this is going to help me. I get a physical every year and am in good health. (Will be 70 in Oct) Do think that if and when this BiPAP starts working I will not be any better off that before I started.

Bob

[cflame1]

have you tried reading your card? If so what's it say? You can use either Encore Pro/Viewer or Onkor

[Streaming Bob]

DWE says I can bring the card to them to read. I will do that next week. Thanks for the suggestion
Bob

[robysue]

Have you tried reading the data on the PR BiPAP's LCD----it's under the box labeled Info. Won't give you much info, but it would be useful (and possibly enlightening) to know what the machine reports as your 7 day AHI at this point.

As for the "Not sleeping with BiPAP". You write:

I have been on BiPAP since 13 April. This Monday I changed DME and have a new mask that works and fits better. I stop taking over the counter sleeping pill and no longer have dry mouth. I slept 4 or so hours and can't go back to sleep for an hour of so.

Saw the sleep Dr. Thur and he wants me to at least sleep 6 hours with out waking so he prescribed some sleeping pills. I took the first one last night and woke up every two hours, but did not have and problems going back to sleep. Dr. said to call him this coming Tue. and report.

Code: Select all

Before I start this BiPAP thing             After being on the BiPAP 

Slept good 10PM to 6:30 PM                     Wake up every 2 to 4 hours
Rested                                         Tried all the time
Excellent Blood Pressure                       Don't know
No sign of heart problems                      Don't Know

Still don't know how this is going to help me. I get a physical every year and am in good health. (Will be 70 in Oct) Do think that if and when this BiPAP starts working I will not be any better off that before I started. (edited by robysue to make the lists easier to read)

I can so identify with this. As someone who has been dealing with insomnia issues for the last 7 months in addition to adjustment issues, I'm convinced that if I'd been a bit less resistant to my PA's insistence about regular bedtimes and wakeup times (the missing piece of sleep hygiene), my insomnia might not have grown quite so fearsome. And even now I keep wondering if I'll ever feel any better than I did before starting CPAP, even though I know intellectually it is supposed to be helping keep my body healthier in the long run.

I think you are wise addressing the insomnia NOW rather than waiting. Be sure to talk with the doc about how LONG he thinks you should take the prescription sleeping meds and how to WEAN yourself off when the time comes. And if you continue to wake up every two hours while taking the sleeping meds, report that too.

And keep in mind, you're still very new to the BiPAP and there is a lot to get used to:

• sensory overload triggered by the air blowing into your nose; the noise the machine makes; the sensation of the mask on your face; possible leaks waking you up, aerophagia; a dry mouth; a dry nose; skin problems triggered by the mask; a sore nose and/or sore nostrils; headaches caused by a mask being over tightened; an over awareness of your own breathing, etc. etc. etc.
  
  mask issues including properly tightening the mask (is it too tight? is it too loose?); mask leaks blowing into your eyes or onto your lips; exhaust flow from the mask bouncing off the covers and back into your eyes or onto your chest; removing the mask in your sleep; wanting to remove the mask so that you can get to sleep; worrying about leaks so much that you are not able to properly relax to get to sleep; and worrying about dislodging the mask to the point of feeling like you can't move around in bed as much as you'd like.
  
  pressure issues including a feeling that your breathing is so abnormal that you can't relax enough to fall asleep; difficulties with exhaling against the pressure; difficulties with feeling like you can't properly inhale or can't get enough air through the mask---particularly during the ramp period (if you use the ramp); feeling like the machine is rushing you to inhale when the exhale relief system is turned on; too much air in your mouth, swallowing air, aerophagia, etc.
  
  humidifier issues including rainout; congestion caused by too little or too much humidity; air feeling too warm, too wet, too cold, too dry; worrying that the humidifier may run dry.
  
  hose issues including getting tangled in the hose when you want to turn over; disliking the feel of the hose when your arms or chest bump up against it; weight of hose pulling the mask out of position; feeling tethered or trapped by the hose, etc.

And as this lengthy list makes clear: Some of us face a pretty step learning curve for learning to sleep and sleep well with a mask on our faces.

For most new CPAPers, it's only a matter of time before the problems with getting to sleep and staying asleep start to resolve themselves. And sleep begins to return to normal---in the sense of falling asleep in a timely fashion after going to bed at a decent bedtime; having few or no awakenings in the middle of the night; having no problems getting back to sleep quickly after these awakenings; sleeping through until morning and waking up feeling more rested and more refreshed than when you went to bed.

And hopefully with the prescription sleep medication you will find your problems starting to resolve themselves pretty soon instead of blowing up into a full-fledged case of CPAP-induced insomnia.

[Streaming Bob]

Took Lunesta sleeping pill for the second night and woke up about every 2 hours. Going to see a ENT specialist tomorrow and talk to the DME lady. Also scheduled to talk to my Sleep DR. on Tuesday.

Thinking of seeing the Heart Dr. and if nothing is wrong gettting off this BiPAP thing and try to control snoring.

Good thing Medicare is paying for this.

Thanks for the comments
BOB

[kteague]

Bob, I just want to suggest that you somehow try to discern between having a problem that needs addressed and the notorious expected adjustment phase. Waking up a lot early on is not unusual, and only matters if it is caused by ineffective treatment. I'd just hate for you to struggle to fix something that time will take care of. On the other hand, I experienced ineffective treatment early on, and wish it hadn't taken so long to resolve. Best wishes in figuring things out.
Kathy
P.S. - Limb movements aren't an issue?

[TalonNYC]

Took Lunesta sleeping pill for the second night and woke up about every 2 hours.

Hi Bob:

Can't speak to the other issues, but I can help you with this one. Ambien and Lunesta (the "standard" doses) do NOT help you stay asleep. They're designed to make you fall asleep easier and faster, but wear off pretty quickly. Both of these drugs do have time-release versions, however. They put out micro-doses of the drug for up to 6 hours. Double-check with your Primary Care Physician and make sure you get the one that lasts up to 6 hours.

The problem is that there are two forms of insomnia. Initial insomnia keeps you from falling asleep. Maintenance insomnia keeps you from staying asleep. Some people have both (I have only Initial for the most part). The right pill can help with either or both =)

[Streaming Bob]

Thanks all -

Talon I will ask my sleep Dr. on Tue. for a time release sleeping pill.
Bob

[Streaming Bob]

It is now May 12 and I am still not sleeping well. I did get slow release sleeping pills Zolpidem Tart Er (Generic for Ambien CR)
Took them for 6 day and felt worse with them so quit the sleeping pills. Got data from the DME
for the period 5/2 thru 5/9 I had
Ave AHI 12.8
Ave CA 7.5 Clear airway Apnea
Ave Leaks 7%
Also got my machine to read 7 and 30 days ave.

This morning
AHI 7 day ave 13.6
AHI 30 day ave 16.0

Leaks
7 day ave. 3%
30 day ave. 7%

I review the Sleep Study and saw my oxygen saturation while awake was 89% and on BiPAP it when up to 91% Did some research and found that normal is 97 to 99%. So this might be my problem.
Going to see the Sleep Dr. tomorrow.

VERY CLOSE TO GIVE THIS THING UP. Not much sleep. I know that people have talked about effects on the heart and other things, but what does sleep deprivation do to you heart and other organs.
Can someone show me the statistics on the effects on the heart etc.


Thanks Bob

[robysue]

It is now May 12 and I am still not sleeping well. I did get slow release sleeping pills Zolpidem Tart Er (Generic for Ambien CR)
Took them for 6 day and felt worse with them so quit the sleeping pills.

I'd report this to the sleep doctor's office if I were you. You feel that you need help dealing with the insomnia that's being triggered either by trying to adjust to CPAP or (given the data you include) ineffective treatment so far for your apnea. When you talk to the receptonist asking for a call back, be sure to tell her about BOTH problems.

Got data from the DME
for the period 5/2 thru 5/9 I had
Ave AHI 12.8
Ave CA 7.5 Clear airway Apnea
Ave Leaks 7%
Also got my machine to read 7 and 30 days ave.

This morning
AHI 7 day ave 13.6
AHI 30 day ave 16.0

Leaks
7 day ave. 3%
30 day ave. 7%

Those numbers----both AHI and Percent Time Spent in Large Leaks are way too high. Both could be contributing to your insomnia: The apneas & hypopneas in the obvious way---they trigger arousals, which while they did not wake you pre-CPAP may well be waking you simply because of all the other sensory overload from trying to use the CPAP and the Leaks because large leaks are pretty irritating. They also may part of why your therapy is not yet going well in terms of getting that AHI below 5.

I review the Sleep Study and saw my oxygen saturation while awake was 89% and on BiPAP it when up to 91% Did some research and found that normal is 97 to 99%. So this might be my problem.

Undoubtably these low O2 levels may be part of your problem. Are those the baseline numbers or are they simply the min. values over the night of the PSG?

Going to see the Sleep Dr. tomorrow.

Go with a list of PROBLEMS and QUESTIONS written down ON PAPER. If you have spouse/significant other who can go with you to the appointment, consider taking them along. You might want to group the questions into three broad categories: Things pertaining more to the CPAP therapy. Things pertaining more to the insomnia. And things affecting BOTH CPAP therapy and insomnia.

Obviously you want to bring up those machine AHI numbers at tomorrow's meeting. You should ask directly about what can or should be done to try to get those numbers down. You could ask whether the leaks are HUGE concern or only a BIG concern----but without leak rate graphs (not just the numbers) the doc won't be able to really say much. Besides, it's the DME that is primarily responsible for helping you deal with the leaks.

Don't let the insomnia get forgotten in the discussion about the AHI numbers: Make sure you let the Sleep Doc know you couldn't tolerate the way the Ambien CR made you feel. If the insomnia is what's really getting your goat, you might ask about combining a drug based approach with a cognitive behavior approach to fighting the insomnia. If nothing else, the sleep doc should be able to provide you with guidelines on establishing really good sleep hygiene.

Things that affect both include talking to the sleep doc about your concerns about what the sleep deprivation caused by the insomnia is doing to your heart and organs vs. the damage the OSA either has or is capable of doing to your heart and other organs.

VERY CLOSE TO GIVE THIS THING UP. Not much sleep. I know that people have talked about effects on the heart and other things, but what does sleep deprivation do to you heart and other organs.
Can someone show me the statistics on the effects on the heart etc.

Don't give up YET. You've only been using CPAP for about one month. That's not really that long (yet). Some people take several months to become fully acclimated to everything that CPAP therapy involves and to start feeling more like their old self (if they were asymptomatic) or start feeling better (if they had symptoms). And since your AHI's are not yet sufficiently low, part of your current exhaustion, daytime sleepiness, and nighttime insomnia may be due to ineffective treatment and NOT just due to a difficult adjustment period. See if the doc has a reasonable suggestion on what to do about getting that AHI down and tell your self that you'll stick with the CPAP for at least one more month. And then monitor the AHI on a close basis. Unfortunately, the machine's LCD makes this hard because all it reports are the 7 day and 30 day AHI figures. But trends are what is key: Do those numbers start to drop (slowly because they are averages) or do they remain in the low double digits? And if they remain high after another week or two, call the sleep doc back and TELL his office the treatment is NOT yet effective.

[Streaming Bob]

Thanks Robysue for your suggestion.

One important point for me is that I felt really good and slept well before this whole thing started. I will be 70 in Oct.

Is this worth it to give up QUALITY OF LIFE??

I think that sleep apnea does effect your heart, but so does a lot of other things.
How much effect does it have on your heart? No one knows. How much effect does losing weight have on your heart?? How much effect does drinking coffee have on your heart. How about exercise and on and on.

I did not have a base line on the O2 before the sleep test.
Do not want to take any more drugs. I only take one prescription which is a nose spray.

I didn't think that 7% is a high leakage but will check with Dr. tomorrow.

Bob

[robysue]

One important point for me is that I felt really good and slept well before this whole thing started. I will be 70 in Oct.

Is this worth it to give up QUALITY OF LIFE??

These are RELEVANT questions. But I'd still try to give it one or two more months before throwing in the towel. If you're still not feeling better in another month or two, your "adjustment" has clearly gone on long past "average" or "typical" which seems to be (from reading things around here) somewhere between one and two months.

I think that sleep apnea does effect your heart, but so does a lot of other things.
How much effect does it have on your heart? No one knows. How much effect does losing weight have on your heart?? How much effect does drinking coffee have on your heart. How about exercise and on and on.

And I think you are SMART to ask that question---particularly the way you did in the previous post: Is the probability potential damage to my heart from the chronic isomnia more or less than that of untreated apnea? And is the damage from the untreated apnea likely to be more severe than the damage from the insomnia?

I did not have a base line on the O2 before the sleep test.
Do not want to take any more drugs. I only take one prescription which is a nose spray.

Understand you concerns about drugs. I share it with you. And good luck. But those O2 numbers you posted are scary. Make sure you talk about them.

I didn't think that 7% is a high leakage but will check with Dr. tomorrow.

The problem is that there's no firm definition of what a "Large Leak" is on the PR S1 machines and lots of us know we've had nights with leaks that were large enough to be an issue, but they were NOT flagged by the S1 as a "Large Leak" And that 7% figure means that 7% of the time the S1 was running, it was detecting a leak large enough where it feels your therapy was likely compromised. And 7% of one hour is just over 4 minutes. So if we assume that you've had the machine running for a modest 6 hours per night for seven nights, that's a total of 42 hours run time, which means you've been in a Large Leak for at least 168 minutes during the week. The thing is, unless you check that LCD every morning, you could easily have a really, really bad leaks one or two nights. And that is something that you want to deal with so that you are more comfortable with the whole mask on your face.

Bob[/quote]

[Streaming Bob]

Thanks Robysue. I would like more comments from the board before my meeting today with the Dr.
Thanks all
Bob

[Pugsy]

I wasn't going to comment because I really don't have anything new to add so I will just add a ditto to what Robysue has said.
Your AHI indicates less than optimal therapy and that percentage of leak showing on that machine is indeed Large leak and given the general huge leak that Respironics will allow before flagging Large leak time... Your leaks are a significant problem.

Information off the LED screen is pretty limited. Actually it is so limited it sucks. Are you aware that there is software available and an online analyzer that you can use to see exactly what is going on and exactly how much that leak is and the impact on therapy?

[DoriC]

https://www.cpap.com/productpage/respir ... eader.html

Hi Bob, You've been given some good responses by Robysue and Pugsy so I'll only add that software is essential to analyze the data and figure out what's really happening during the night. You'll get lots of help here about that. This therapy takes a period of adjustment and some patience. I hope you'll keep us posted.