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Skypony's therapy-time to ask for help
#21
RE: Skypony's therapy-time to ask for help
I slept very well last night even though the numbers don't agree. The only pause in recording was when I put on my chinstrap because I was getting some mouth leaks.

I also used a new EMAY recording oximeter for the first time last night. I did wake because my finger was hurting from the pressure and I had to switch it to another finger. I think that was about 3:30 but I can't remember now.

I can't find a way to display the .csv data in OSCAR. I tried importing it using both the ZEO and Dreem options which use .csv files. The importations both seemed to work but I can't view the data. Maybe my .csv files are incompatible.

I can't explain why my numbers are so much worse than they were about a month ago when I first used OSCAR but they are what they are. Let's proceed.

So, I'd like some guidance on what to do tonight. Thanks.


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#22
RE: Skypony's therapy-time to ask for help
I'm inclined to believe you've done all you could to edit therapy to help avoid the CA, and I think the best answer is to discuss with the doc that it is not working nor are these results acceptable. The near constant CA is not affording comfortable or restful sleep. Take OSCAR data to the doc if you're so inclined to do, but I would also be armed with a notebook of symptoms and complaints of all the problems with CPAP and how your sleep is not restful. Note things like the high CA, arousals, waking unrested, etc. State you want the doctor to discuss with you getting the ResMed AirCurve 10 ASV, as ResMed describes it as the machine made to treat CA. You should state you understand the difference in an ASV treating CA and all other machines avoiding it, and that the ASV treating CA is successful while avoiding CA with other machines highlights the CA attribute of consistently inconsistent as in up and down per night.

FWIW CA can be treatment emergent due to carbon dioxide washout from the PAP machine making CO2 removal too efficient than the body/brain is accustomed to. The body had adjusted to apneic breathing and typically resets/adjusts to the new breathing efficiency within 3 months of PAP use. TE/CA is indicated if your sleep study didn't show 50% apnea to be CA typically.

CA can be pre-existing or predominant. These CA will be marked on the sleep study as 50% or more of the apnea recorded during the test. These CA will not go away in the 3 months of getting used to PAP breathing efficiency. In fact this type CA may get worse on PAP and much worse on BPAP without backup breath rate. They do respond well to ASV.

Final type of CA is idiopathic, basically meaning medical cause unknown. They may or may not show up on a sleep study. This type may appear only on a PAP and like predominant are not diminishing after the 3 months on PAP.

I don't remember seeing CAs listed, or actually any apnea counts, on your sleep study. If the CA weren't 50% or more of the events, it's likely unknown cause/idiopathic CA. Even so, the ASV is the best answer. Read up on it, arm yourself with ResMed statements of ASV use, and make your symptom and complaint list. Then go to doc and tell him/her you need help in them seeing CA as real and being a real problem you need them to help you remedy. And that means likely a sleep study with ASV as part of the test. You'll probably also need an echocardiogram to prove your heart's LVEF % is 45 or above. State your belief in need for the ASV and state you want the ResMed.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#23
RE: Skypony's therapy-time to ask for help
Hi Dave, skypony's sleep study showed no CAs and not a lot of OAs. Hypopneas and RERAs predominated. CAI was 0, OAI was 3, and AHI was 23; RDI was 33.

Skypony, because your centrals are treatment-emergent and you are not having a lot of obstructive apneas at 8, I think the next step is to drop down a little further. I would suggest min = max = 7.6 tonight. We're looking for a place -- if there is one -- where we will see your CAs start to come down and your OAs stay about the same. You would then keep those settings for a while, in the hopes that your body would be acclimating. After that, we would try to start re-introducing EPR to get those FLs and Hs down.

I'm glad you felt rested last night, though. I recently got a Dreem headband, and I was surprised to see that few of my centrals correspond to a wake-up or change in sleep stage. Who knows how accurate the thing is, but this has been pretty consistent.

Your oximeter isn't listed as supported, but for what it's worth, this morning I couldn't import my Dreem data, even though that had worked smoothly for many days. I'll mention this on the tech forum.
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#24
RE: Skypony's therapy-time to ask for help
Dave, I am willing to go the ASV route if necessary but only after all options are exhausted. Please don't think that I don't value your assistance. I do.

My sleep study showed zero CA (see post #1). My early experience in Oct had much lower CA than now. I cannot explain the difference.

I've been on CPAP for about 6 weeks and have experimented with many masks of all types, mouth tape, soft cervical collar, chinstrap and varying pressures. Maybe the many changes have not given me a chance to become adjusted to therapy. I personally believe that most of my CA is SWJ because the clusters are usually around wake events. I think the rest are likely treatment emergent.

I have now found my most comfortable mask setup, a nasal cushion used with a chinstrap. I'm not sure if it will work at higher pressures but will try if advice says go higher. So most of the variables have turned into constants. I think pressure changes are all that are left to work out so maybe I can start to readjust.

I haven't given up yet on my ResMed APAP.
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#25
RE: Skypony's therapy-time to ask for help
OK try reduction in settings like Dormeo suggests. I'm not here for popularity or that I have to be right, just wanting to have you get best therapy possible. Certainly do exhaust all setting configurations on the PAP. See if it does do anything for you. Due to the fight involved to get ASV, you have to be convinced yourself it's the right option. Whatever you try, report with your personal feeling on the therapy and with OSCAR. That last OSCAR looked like a rough ride, and I'd not want that one myself.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#26
RE: Skypony's therapy-time to ask for help
I will follow Dormeo's suggested settings for tonight.

If I did have to eventually go with ASV, I'd buy it myself rather than fight the system to get it. I think I'd have many poor sleep nights by fighting to get an ASV.

My last night's OSCAR did look like a rough ride but I felt like I slept much better than usual.
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#27
RE: Skypony's therapy-time to ask for help
Thanks Dormeo. I'll use your numbers tonight.

One thing I thought of is that before CPAP, I had to use oxymetazoline spray to have any chance of a good sleep. I used one spray in each nostril at bedtime which is a smaller than recommended dose. I apparently have very narrow nasal passages. I suspect that the negative pressure on inhalation would tend to collapse those passages further. I didn't like to have to use the spray and have not used it while on CPAP. The positive pressure therapy does seem to help my nasal inhalation. Might those narrow nasal passages cause flow limits?
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#28
RE: Skypony's therapy-time to ask for help
It is possible; flow limitations can theoretically occur anywhere in the airway. The most common problem arises when the tissues in lower parts of the airway relax, but constriction in the nose could also be a cause.

Oxymetazoline should not be used for more than short periods of time, as you probably know. You might want to try over-the-counter Flonase, which can be used long term. It can take a few weeks to kick in.

I would suggest that you use nothing tonight so you can more clearly see what happens with the pressure reduction. But in another few nights, it would be worth trying oxymetazoline for a night or two to gauge its effects. In other words, one experimental change at a time, to the extent possible.
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#29
RE: Skypony's therapy-time to ask for help
I used OTC flonase for a few weeks about a month ago but have tried Xlear instead for about 9 days now since it is not a drug.

Wow! This discussion made me realize that I was using the flonase when my AHI's were better and have been using Xlear since my AHI's have been getting worse. I don't know if it is cause and effect but I'm not going to use Xlear any longer. I don't think I'll use flonase either for a while. Maybe this is the answer as to why my numbers have been getting worse. I never associated these factors before.

I think the light bulb just lit up. Idea
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#30
RE: Skypony's therapy-time to ask for help
Last night was a tale of two sessions. It was the best of times, it was the worst of times. Well, almost.

I slept fairly well for the first session. After waking about 2:30 to go pee, I could not go back to sleep. I stayed in bed, hoping to sleep, but I was awake from 2:30 until at least 5:30. The problem was that I felt like I was not getting enough air. It was a struggle to inhale. I suspect that the resistance from my narrow nasal passages was not overcome by the 7.6 pressure. It probably increased my CO2 too. This was what Dormeo wanted, to see if my CA's diminished when the CO2 was not flushed away. They did!

I will attach two files, the full night details and the first session only. The second session is almost entirely SWJ but the first session has useful data. 

I'm ready for the next step. I hope I can increase pressure so I don't feel like I'm suffocating.


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