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Feeling Worse After 1 Month of Therapy - Any Thoughts?
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Author:  Wannarideagain [ Sat Sep 19, 2020 10:23 am ]
Post subject:  Feeling Worse After 1 Month of Therapy - Any Thoughts?

I have CFS and the whole reason I got into CPAP therapy is for deeper, better quality sleep to hopefully help me with my quality of life.

After fighting masks all summer, I finally settled on the Vitera (with gel nasal pad + cloth cover & extra cloth for leaks).

After 2 weeks of consistent therapy, I was so wiped out I asked my doctor for Ambien to help me adjust. Now at the 1 month mark, I'm still significantly worse off energy-wise than I was before I started. I often feel wired when I wake up, but simultaneously exhausted, and after a couple of hours I'm only exhausted. Ambien has helped with the wired, but not the exhaustion. I've also started Yoga Nidra in the mornings to relax better.

I sleep about 7 hours, take the mask off and go back to sleep for 1-3 hours (despite the mild wired). I spend nearly or all of the rest of the day on the couch resting up for my next night's "sleep".

Any ideas on feeling better rather than worse?

Thank you

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Author:  DeltaBravo3.8 [ Sat Sep 19, 2020 11:44 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

It doesn't show in that image, but I suspect your flow limits are high. If so, you need more pressure. Show the FL please. You can grab the chart borders in OSCAR and squish them so more charts show in a screenshot. I also think you're not doing yourself any favors by sleeping without the PAP therapy. I did that myself a long time ago, and I had to make myself sleep only with mask on because every mask off session tends to undo the therapy you just had. Recognizing that you like to sleep without the PAP and mask tends to highlight your therapy is not helping much despite low AHI. This means there's lots of work to be done yet. Despite the CA, I'd be of the mindset to run it in Auto with EPR instead of static pressure. You are not benefiting much as is. Something has to change for this to get you better sleep.

Author:  Wannarideagain [ Sun Sep 20, 2020 7:28 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

DeltaBravo3.8 wrote:
It doesn't show in that image, but I suspect your flow limits are high. If so, you need more pressure. Show the FL please. You can grab the chart borders in OSCAR and squish them so more charts show in a screenshot. I also think you're not doing yourself any favors by sleeping without the PAP therapy. I did that myself a long time ago, and I had to make myself sleep only with mask on because every mask off session tends to undo the therapy you just had. Recognizing that you like to sleep without the PAP and mask tends to highlight your therapy is not helping much despite low AHI. This means there's lots of work to be done yet. Despite the CA, I'd be of the mindset to run it in Auto with EPR instead of static pressure. You are not benefiting much as is. Something has to change for this to get you better sleep.



Thank you, DeltaBravo. I'll start easing upward on my pressure, and, sigh, use the mask my entire sleep time. I confess, though, I don't know how to change to auto. Could you tell me where that is? I may be looking right at it, but I don't see it on the basic screen or the clinical settings. I took a proper shot of today's data (electronically challenged), so you can see the flow limits.

I'm grateful for the idea of things to change to get better sleep!

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Author:  DeltaBravo3.8 [ Sun Sep 20, 2020 9:53 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

OK sure, first you have to enter Clinical Mode/Menu. Hold the Home and push the Dial in together for about 5 seconds. You're then in Clinical Menu settings. You need to turn the dial to move to various areas and to edit values. Look for MODE, it should have CPAP and other options; look for something like AUTO. Use the dial to move to AUTO and click to select. Other settings should be available such as more pressure settings. It looks like you have CPAP pressure 8.4 now. It should give Min and Max or similar. I am guessing as I've never seen an APAP menu, so if I'm off just tell me what settings you see and we can fill in blanks for you.

Let's try to set it for Auto Mode and range of 8-12. You should see EPR an Exhale Pressure Relief of OFF then 1, 2, 3 and also Full Time or other settings. Make that Full time and 1, try it see if you like it. View OSCAR as well. You can try any of 1-3 but let's start on 1 and then you can edit up if the results are good.

Author:  VegasGMC62 [ Mon Sep 21, 2020 8:25 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

I used Ambien for 5 years with no issues until I started on CPAP. Every time I've used it on CPAP I had a bad night and felt tired all day. The OTC sleep aid Doxylamine Succinate (Unisom) works good for me.

Author:  DeltaBravo3.8 [ Mon Sep 21, 2020 10:20 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

FWIW I've been given feedback here and the AB forum that some sleep aids increase the probability of having more apnea events.

Author:  Pugsy [ Mon Sep 21, 2020 10:50 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

I was told by my sleep doctor that most sleep aids won't make OSA worse but any medication that causes an increase in relaxation of the tissues or muscles can. She was more worried about muscle relaxant meds than sleep aids...even RX sleep aids or even RX pain meds.

It depends on the working mechanism behind the medication and she told me that even if something makes the OSA slightly worse that it can be dealt with and we have to get sleep first and foremost because without sleep none of this matters much.

Author:  Respirator99 [ Mon Sep 21, 2020 10:21 pm ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

Looking at the last chart above, I see a persistent leak around 18 - 20 L/min for a large part of the night. Although this leak won't worry your machine at all, it could be disturbing your sleep. If it blows into your eyes or causes "face farts" or other noises it might be enough to prevent you getting fully rested.

Author:  Wannarideagain [ Tue Sep 22, 2020 6:48 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

VegasGMC62 wrote:
I used Ambien for 5 years with no issues until I started on CPAP. Every time I've used it on CPAP I had a bad night and felt tired all day. The OTC sleep aid Doxylamine Succinate (Unisom) works good for me.



Thanks, Vegas. I'll give it a try. Ambien has been helpful for me, but I think DeltaBravo is right about it increasing apnea. I know it did when I increased the dose for a couple of nights.

Author:  Wannarideagain [ Tue Sep 22, 2020 6:51 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

DeltaBravo3.8 wrote:
FWIW I've been given feedback here and the AB forum that some sleep aids increase the probability of having more apnea events.


True - Ambien does. When I take 5mg it doesn't seem to matter, but when I went up to 7.5mg for a couple of nights, it did increase my events - especially the OA's. I went back down to 5mg after that. Haven't taken any the last couple of nights. Maybe shoulda last night ...

Author:  Wannarideagain [ Tue Sep 22, 2020 7:04 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

Pugsy wrote:
I was told by my sleep doctor that most sleep aids won't make OSA worse but any medication that causes an increase in relaxation of the tissues or muscles can. She was more worried about muscle relaxant meds than sleep aids...even RX sleep aids or even RX pain meds.

It depends on the working mechanism behind the medication and she told me that even if something makes the OSA slightly worse that it can be dealt with and we have to get sleep first and foremost because without sleep none of this matters much.


Indeed! I have skipped the last 2 nights, trying to judge if going to APAP and increasing pressure helped as much as the Ambien. It's hard to say - my son visited Sunday, so I'm currently in my 5-day crash mode. Which will start all over again after Friday - my CPAP compliance visit :lol:

Do you have any further thoughts on adjustments or whatever for me to feel better rested? I'm going to ask the nurse practitioner on Friday, but I'm not optimistic on getting any help there.

Thanks

Author:  Wannarideagain [ Tue Sep 22, 2020 7:15 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

Respirator99 wrote:
Looking at the last chart above, I see a persistent leak around 18 - 20 L/min for a large part of the night. Although this leak won't worry your machine at all, it could be disturbing your sleep. If it blows into your eyes or causes "face farts" or other noises it might be enough to prevent you getting fully rested.


Thanks, Respirator. With the cloth cover and some additional fabric sewn on, I don't feel any leaks that I'm aware of. How much of a leak I have seems to REALLY vary from night to night.

This is mask #4, and I'm not sure what else to do about leaks. When I tighten the straps it tends to get uncomfortable - and sometimes gives me more of a leak than I had before adjusting.

Any ideas?

Author:  Wannarideagain [ Tue Sep 22, 2020 7:46 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

DeltaBravo3.8 wrote:
OK sure, first you have to enter Clinical Mode/Menu. Hold the Home and push the Dial in together for about 5 seconds. You're then in Clinical Menu settings. You need to turn the dial to move to various areas and to edit values. Look for MODE, it should have CPAP and other options; look for something like AUTO. Use the dial to move to AUTO and click to select. Other settings should be available such as more pressure settings. It looks like you have CPAP pressure 8.4 now. It should give Min and Max or similar. I am guessing as I've never seen an APAP menu, so if I'm off just tell me what settings you see and we can fill in blanks for you.

Let's try to set it for Auto Mode and range of 8-12. You should see EPR an Exhale Pressure Relief of OFF then 1, 2, 3 and also Full Time or other settings. Make that Full time and 1, try it see if you like it. View OSCAR as well. You can try any of 1-3 but let's start on 1 and then you can edit up if the results are good.


Thank you, DeltaBravo. Found the APAP from your instructions (Duh on me!). I was chicken to go to 12 on the upper end, so I did 9.6 one night, and 10 last night (when the pressure seemed to range ALL over the place, though I had almost no events. What's up with that?). I'm having some aerophagia, but it's not too bad, so I may keep going up every night until I do run into a problem with it.

I had a terrible time exhaling on a nasal pillow (my first mask), so I found EPR then and set it on 3 before I was done and have just left it there since. It's such a pleasure to be able to exhale when breathing, lol. Should I try backing it down?

I can't tell if I'm feeling better yet - but maybe it'll take a week or more. And I'm currently having a crash from my son visiting on Sunday. (Hence the gap in OSCAR last night. Have skipped Ambien last 2 nights and was too tired to sleep at first last night)

What exactly are flow limitations?? Is it measuring when your breathing is somewhat blocked - corresponds to events or is an almost-event? What are good numbers for flow limit.?

Thanks. OSCAR from last 2 nights:

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Author:  DeltaBravo3.8 [ Tue Sep 22, 2020 9:25 am ]
Post subject:  Re: Feeling Worse After 1 Month of Therapy - Any Thoughts?

OK yes do as you say on a gradual upward adjustment in light of aerophagia being present. The chart is in an area where it is now adjust for comfort more than events. Leaks are still present, but it's not above 24 L/min and it's not consistently near that 24 either. Just keep an eye on it, FWIW leak rates do not need to be zero. There is some expected leaks as this encompasses exhale ventilation as well as I recall it. I typically suggest a relatively low fairly consistent without impacting mask comfort and low enough to reduce disturbances caused by the leaking. A reasonable leak rate is good, yours can be acceptable if it does not impact disturbances. At situations like yours, sometimes you have to pick which battles to take on and which to leave alone. So bottom line is if it's not impacting your sleep negatively, you may want to move on to other battles. It is your call though. I see it as the leak rate you post is fairly repeatable on various charts, so maybe this is your best on that. Priority is on comfort now.

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