Assistance with Therapy

[Doublearon]

Hello,

Last time I posted on this forum, I was looking for help with becoming acclimated to using the CPAP. After considerable effort, I can now say that I am able to use the machine consistently every night for 7+ hours. This is a huge deal for me and it might sound kind of lame but I'm actually very proud of myself for making it this far. I honestly never thought I would get to this point.

Now that I am actually able to use the prescribed therapy, I am looking for help optimizing it. I have seen people post on here that most CPAP users can get their AHI down to less than 5 with the correct settings. Currently, I would say my average AHI from night to night is hovering around 8. I have had a few nights close to 5 AHI but it really varies a lot.

It has been about a month since I have been using the machine consistently. I know from reading the forums here that it can take quite some time for people to start feeling the effects of the therapy. My question is: given that my events are still predominantly above 5, will I even start to feel any better even if I wait 6 months? Or put another way, is the therapy even really effective at this point? Subjectively, I don't feel any better at all but I know that's not necessarily a good indicator as it takes time. I want to do what I can so that my therapy is setup in such a way that its effective and I know that eventually (someday...) I should feel better. Currently, I'm not even confident if I'm standing at the starting line (if that makes sense).

Feel free to ask any questions and I will do my best to answer. I have posted two nights worth of data from OSCAR below. Thanks in advance for the help!

OSCAR_20210323.PNG (145.25 KiB) Viewed 1216 times

OSCAR_20210321.PNG (143.23 KiB) Viewed 1216 times

[Pugsy]

Turn EPR off. You shouldn't need it with the starting minimum pressure of 5 cm anyway.
If you just can't fall asleep with EPR off then use it during ramp only and make use of your ramp feature.
This can be done in the settings....have EPR be active only during ramp.

Your AHI is primarily central apneas...not sure what is causing it but sometimes EPR use and cause centrals so lets try easy first and remove EPR and see if you central apneas reduce or not.

Are you waking often during the night?
Do you take any medication of any kind, if so...what?

Above 2 questions are very important so please take the time to answer.

And yes...if we could get your AHI greatly reduced I suspect that you will feel some improvement....how much we don't have any way of knowing.
Waiting another 6 months without doing anything to reduce it won't do a thing. You've already given it a lot of time.

Also...not using the cpap each and every night...recipe guaranteed to make someone feel like crap when you don't use it.
So what do you mean by

It has been about a month since I have been using the machine consistently.

Skipped a couple of nights during the past month or only used the machine twice during the past month?

[Doublearon]

Hi Pugsy,

Thank you for taking the time to respond, I appreciate it.

I currently have the EPR set to ramp only.

Answers to your questions:
1.) I don't wake up very often. I would say most of the nights I sleep all the way through. Sometimes I will get woken up as my fiance gets out of bed or showers or something but its not that often.
2.) I currently take citalopram 20mg for anxiety. It is the generic version of Celexa (pretty sure).

I wasn't very clear when I said it has been about a month since I started using the machine consistently. What I should have said is that I have been using the machine consistently for the past month. It took me almost a year to get to the point of using it 7+ hours which I have done for the last month. I hope that clears it up. After making it this far, I don't plan on skipping any days!

I'm not sure what is causing the centrals. I don't even know how to tell if they are real or not...?

Thanks again.

[Pugsy]

Watch all the videos here.
If awake or arousal related breathing is present during or right before the flagged central....not real.
http://freecpapadvice.com/sleepyhead-free-software

You must be sound asleep for the centrals to be real.

The mask pressure graph fooled me...looks like 2 pressures which means EPR on.
Next time omit mask pressure and include the regular pressure line. It's more useful at this point than mask pressure graph.

Damn...turning EPR off was just about my only potential trick up my sleeve to reduce the centrals.

Tell me exactly what kind of unwanted symptoms you are having that you wished you didn't.
Let me know how many of those centrals look arousal/awake related.

If you think the bulk of them were asleep centrals....reduce your max pressure to 6.5 and lets see what happens.
Yes...I know you will likely hit the max some but at this point I am trying to figure out if your centrals are related to pressure itself since we can't blame EPR.

[Doublearon]

I will do my best to watch the videos and analyze the data later today.

I would say my main symptoms are always waking up tired regardless of how much I sleep and constant tiredness/fatigue during the day. I'm relatively young (34) and relatively healthy so I don't feel like I should be exhausted all the time. I feel as though I should have the energy to make it through the day without always wanting to lie down to rest. I don't expect to wake up in the morning and jump out of bed but I also don't think I should be more tired when I try to get up than I am when I go to sleep.

[Doublearon]

Alright, I took a look at the data and.... I'm not really sure. My breathing pattern didn't seem as regular or uniform as the examples shown in the video which made it hard to decide between arousal vs non-arousal CAs. My personal opinion is that some of them were definitely flagged incorrectly but that more than 50% were legitimate. But, I am certainly no expert and I could be wrong.

After looking at the data, I took your suggestion and decided to lower my max pressure to 6.4 (seems to only go up or down by .2) and see what happens. Last night my AHI was 8.3 with 6.2 being attributed to CAs. Unfortunately, I forgot to put the SD card back into the machine so I don't have detailed data from last night (and maybe the night before).

The night before last, my AHI was around 5 with almost all being attributed to CAs. I didn't change the settings from what they were when I originally posted my data. So with a setting of 5-8, I had a couple nights with >10 AHI and one with around 5. I find it very difficult to draw conclusions about pressure settings when the AHI varies quite a lot on the same exact settings.

It is so frustrating that I don't even know if the treatment is actually working?? It seems like you really can't trust how/why the machine flags events and therefore the AHI can be misleading. If you couple this the fact that even IF the treatment is efficacious, I likely won't feel the effects until some months later, it becomes near impossible to say "its working".

I'm trying to hold onto some hope that I will feel better someday but its definitely not easy.

Thanks again for your help.

[Miss Emerita]

Doublearon, do you have a copy of your sleep study, or do you know what the breakdown of events was (obstructive apnea, central apnea, hypopnea)? If you have a copy, could you post a scan of it (after blacking out personal information)?

Also, I see on line that citalopram can have tiredness and drowsiness as side-effects. You might talk with your doctor about trying a different med.

[Doublearon]

Hi Miss Emerita,

I grabbed a snapshot of my sleep study results, please see below. I never received an actual physical or digital copy with complete graphs and what not. All I have is kind of like a summary of the results.

sleep_study.PNG (33.19 KiB) Viewed 1112 times

My primary care made a similar remark in regards to Citalopram and fatigue/tiredness. I would consider switching because there is a chance that it could be causing some of my energy issues. That being said, I think its probable that some (or all) of my issues are due to lack of quality sleep. I was hoping to address the sleep first and see how I felt. IF after getting my sleep apnea under control, I still feel like crap then I will change my medication. Not sure if that makes sense?

Thanks for responding!

[Pugsy]

You had some central apneas prior to starting cpap therapy.
Your OSA diagnosis was made primarily on the hyponea numbers you had but you had about 7 per hour central apneas as well.
That's roughly what you are having now.
The type of machine you are using will do a good job with the hyponeas (and it seems to be doing that because of the relatively small number of hyponeas) but it won't'/can't do a darn thing for central apneas.
Since you had centrals prior to starting cpap therapy then we can't blame the centrals on the onset of cpap therapy or any settings on the cpap machine.

It is unlikely anything we offer will do anything to reduce the central apnea numbers since they were present prior to the onset of cpap therapy.

A more appropriate diagnosis might have been complex sleep apnea since you had central apneas AND hypones (which are obstructive in nature most of the time).

You may well need a different type of machine....one that can deal with obstructive apnea stuff AND central apnea stuff.
ASV...type of machine.

You really need to be having a discussion with your doctor about the central apneas.

[Doublearon]

Hi Pugsy,

Thank you for your post.

The type of machine you are using will do a good job with the hyponeas (and it seems to be doing that because of the relatively small number of hyponeas) but it won't'/can't do a darn thing for central apneas.
Since you had centrals prior to starting cpap therapy then we can't blame the centrals on the onset of cpap therapy or any settings on the cpap machine.

It is unlikely anything we offer will do anything to reduce the central apnea numbers since they were present prior to the onset of cpap therapy.

A more appropriate diagnosis might have been complex sleep apnea since you had central apneas AND hypones (which are obstructive in nature most of the time).

You may well need a different type of machine....one that can deal with obstructive apnea stuff AND central apnea stuff.
ASV...type of machine.

These were my thoughts as well. But, I know very little about all of this so it makes me feel much better to hear you echoing my thoughts.

The last time I met with the medical professional that has been helping me, I asked about the CAs. They said I should wait a month and see what happens. Their reasoning was that sometimes the centrals resolve by themselves and that I might feel better given that I went from 45 AHI to around 9 AHI. I don't agree with the fact that the centrals might go away because like you said, they were present prior to beginning CPAP. Why would I think they would go away after starting?? That makes no sense to me. I guess there could be a chance that I feel a little better going from 45 to 9 but I don't know. I hope to meet with them in coming weeks so we will see what they say.

[Pugsy]

Sometimes centrals that start up AFTER starting cpap will go away with time. So doctors will often say "give it time" and 9 or 10 per hour is low enough that it is worth "giving it time".
That's because the cpap therapy itself caused them but when someone has a bunch of centrals PRIOR to and without cpap therapy being in the mix then no amount of time on cpap will let the centrals fade away because you will have them even without cpap.

Now sometimes (very rare) central apneas will go away just with cpap therapy....this is NOT very common though but it isn't impossible to have it happen.
Since your central numbers are essentially unchanged....I doubt you got that lucky.

While the centrals are probably not horribly prolonged they most likely are disturbing your sleep somewhat and that could very well be a factor in not feeling so great.
Your meds might also be a factor.

[Janknitz]

Are you seeing a sleep specialist? I think it's important that the centrals be addressed. You may need a different type of PAP therapy to address them, and you have data to support the fact that your current therapy is not addressing the centrals.

[Doublearon]

Sometimes centrals that start up AFTER starting cpap will go away with time. So doctors will often say "give it time" and 9 or 10 per hour is low enough that it is worth "giving it time".
That's because the cpap therapy itself caused them but when someone has a bunch of centrals PRIOR to and without cpap therapy being in the mix then no amount of time on cpap will let the centrals fade away because you will have them even without cpap.

Now sometimes (very rare) central apneas will go away just with cpap therapy....this is NOT very common though but it isn't impossible to have it happen.
Since your central numbers are essentially unchanged....I doubt you got that lucky.

While the centrals are probably not horribly prolonged they most likely are disturbing your sleep somewhat and that could very well be a factor in not feeling so great.
Your meds might also be a factor.

Thanks Pugsy. I will definitely pursue the medication aspect once I feel like I've done all I can with the sleep apnea.

Are you seeing a sleep specialist? I think it's important that the centrals be addressed. You may need a different type of PAP therapy to address them, and you have data to support the fact that your current therapy is not addressing the centrals.

Hi Janknitz,
I guess you could say I'm seeing a sleep specialist; They work at a sleep clinic at least. They haven't been much help at all though. I recently sent a note asking about the central events I'm having and if they thought a different therapy (BiPAP or ASV) would be appropriate. The response I got was that I should have a titration study to fine tune the pressure . No mention of CAs, no mention of BiPAP or ASV. It was like they didn't even read my note. Anyways, I have an appointment with a different place at the end of June. I'm hoping maybe they will be of more help.

Thanks for your response!

[Okie bipap]

Their recommendation of a second study to titration makes sense. The only way they can prove the central events are true events is to do an in lab study. Also, most insurance companies will not approve the purchase of bilevel or ASV type machine without a titration study.

[Janknitz]

Their recommendation of a second study to titration makes sense. The only way they can prove the central events are true events is to do an in lab study. Also, most insurance companies will not approve the purchase of bilevel or ASV type machine without a titration study.

Yes, this!