Getting a machine advice

[dolppl]

If you are referring to comfort on the machine.  I think I am about as comfortable as you can get.  The mask doesn't bother me to wear.  I fall asleep instantly when I put it on.  The pressure doesn't bother me and I do not have very many leaks that wake me up or cause me issues going to sleep.

If you are talking comfort with respect to how I feel during the day.  I feel like garbage most days.  I would say worse than before starting the therapy, but in a different way.  I am more sleep tired than fatigue tired if that makes any sense.  I feel like I could fall back asleep not long after getting up in the morning and all day long.

I have always been able to function even though I was tired all the time with my untreated apnea (or partially treated with an Oral Appliance).   What changed for me was I took a new job last November after 13 years with my old company.  It is a much better job, better pay, but I am starting all over.  I went from knowing (well) hundreds of people at work that I am on bowling leagues with and golf leagues and lots of happy hours.  To now knowing only and handful of people just casually.  In the month leading up to the new job, my anxiety started going through the roof and I became very tired all the time.  This continued when I started my new job and then COVID situation happened as well and now I am working from home and I have about 4-5 hours worth of actual work to do that I spread out over 40 hours until we can get back to normal and start traveling again.  I travel 50-75% of the time for work and once we can travel again we will be really busy.

I am telling you all of this because I really don't have a 'baseline' anymore about how I feel.  Like I said, I was functional before, then I went downhill with the prospect of the new job and starting the new job, then started working from home.  I barely leave the house anymore.  I am so tired all the time I barely can get anything done.  My golf league starts up next Thursday (I love golf, it is my favorite thing to do in the entire world) and I am worried about even going, that I don't know that I will be able to finish the round.  The prospect of trying to golf a round seems insurmountable when just getting up to go get the mail is exhausting.  I feel like if I didn't have all the anxiety and stress of the new job and COVID and the new therapy I would be much better.  I feel like stress REALLY affects my fatigue even more than sleep apnea does.  In the past when I would get stressed out, it would make me exhausted as well.  I think it is a mechanism my body uses to get myself out of situations that are stressful.  If you look at the effects of anxiety/stress on the body, they are all very similar to the effects of sleep deprivation.  So having both is a double whammy. 

Sorry to ramble.  Not sure if there is anything here or if others have any insight.

[Sleeprider]

Well stated and very understandable. Your sleep apnea therapy is not perfect, but it's at a point where it should not be causing the kinds of fatigue you are expressing above, and I hope you can find some solutions. You are not in a part of NY that is hard hit by the virus and yet I'm not aware of a plan to get upstate and western NY open. To top it off, our weather this Spring has been awful, with only a few breaks of sunny warm weather. I hope you will push through and get out with your golf league. I think with all the pressures brought by these circumstances it helps to get out and do things. Maybe consider some vitamin D and if you think you're being affected by depression, get appropriate help. The sooner we get back to our lives the better off we will all be, and feel.

[dolppl]

3 Weeks in and last nights results attached.  Seems like groundhog day.  I bumped the pressure down to 5.8 hoping to clear up these centrals.  I did not have any issues with breathing at that low of a rate.  I might drop it down to 5.6 tonight.  

It looks like if you take out the first week after starting therapy numbers are staying pretty flat.  

Average night is 87% Centrals.  Average CAI over that same time period=4.27

I did try a few nights ago ,just for a data point, bumping the pressure to 8 and putting EPR on 3 and the centrals doubled as expected and was told probably would, but now i have that data point.  Data = Power.

Still not feeling any better than before starting therapy.   

I have an appointment on Friday with the sleep doc for my 1 month follow up.  I will definitely discuss these findings and push for ASV.

I tried a soft cervical collar last night even though nothing pointed towards that it would help but i figured why not give it a try it won't hurt and no surprise it didn't help.  

Any recommendations for something to try no matter how small while awaiting my appointment?  


   

[Sleeprider]

I think from the time we saw your titration sleep study, we knew you would have a problem with central events. I think bringing it up with your doctor is teh way to go, and perhaps ask, how bad does this need to be to move to ASV? You have made a good effort to minimize events using fixed pressure. Obviously, with auto-pressure or more EPR your CAI could be impressive. Above all, you need to discuss how this situation leaves you dysfunctional. it's not about the "numbers", but about how you feel and whether you benefit from the therapy in its current form. From that position, arguing for ASV becomes more persuasive.

[dolppl]

Thank you. 

How confident are we that ASV will help with numbers and feeling less tired all the time?

[SarcasticDave94]

Kudos on doing all you could, but I'm not certain tweaking any further makes it any better. IMO it's gone about as far to get it optimized as possible with the wrong tool. My thinking is it's time to tell doc that it's time to discuss an ASV and that the transition needs to begin ASAP. Note all the continuing sleep complaints, either with pad and pencil or as a mental list. "Doc, here's a list of all the sleep complaints that this machine cannot address. My research says the ASV will address all of these, and I'll be able to sleep better." This can include hard data from OSCAR, but it must be filled to the max with all the discomfort, sleep disturbances, every little or big complaint, etc. that the current machine cannot resolve.

Best to success on making doc get on the same page.

[Sleeprider]

Most members with central apnea issues like yours do very well with ASV. It's more complicated when obstructive events are present, but you have none. I'm pretty sure your ASV therapy will result in good comfort, near zero AHI and better sleep. That said, you have to try it to know for sure.

[SarcasticDave94]

I agree with Sleeprider. I can tell you that the ASV can take care of both CA and OA if that need arises. Your track record of events is mostly all CA as a recall, which is the reason listed for dispensing an ASV according to ResMed.

PS don't take no for an answer from the doc.

[raylock1]

Have you and your doctor ruled out other physical issues?  I slipped back into AFiB , probably as as result of untreated central apneas.  I sleep well, like you, but get really tired going out to the end of the driveway to pick up the paper.  I believe, in my case, the issue is AFiB because the apneas have been reduced to almost zero with the AVS.  I am waiting for NY to allow elective medical procedures again for an AFiB ablation.  I point this out only because sometimes we get focused only one issue and loose track of other possibilities.

[dolppl]

So funny you should bring this up. I mentioned in another post how a few times over the last couple of months my heart rate seemed to jump to around 120 ( normal resting heart rate is around 55) and stayed there for hours no matter what i did. (Relaxation exercises, drinking water, laying down, etc.). It just stayed right around 120 the whole time.  It happened again yesterday and after an hour my wife and brother (who is an EMT) convinced me to get it checked out. I went to the hospital and they did an EKG and hooked me up to a 3 lead for a couple of hours (heart rate stayed elevated the whole time). Took blood and chest X-rays. Doctor said no sign of AFib.  Just Sinus Tachychardia. Recommended I follow up with cardiologist but he didn’t seem too concerned. 

Any thoughts on this?  

It didn’t seem like anxiety to me cause I was not feeling anxious at all yesterday and when I am feeling anxious about something I can always kick back for a few minutes and my heart rate will start to slow down almost instantly.