Khavoqi - Therapy Thread

[Khavoqi]

Hello again peeps.

I still seem to be having the issue of taking off my mask, something I have absolutely no awareness or memory of. 

One thing I noticed is that before I take off the mask, I seem to have a huge flatline, seen in the attachments. Is this me maybe rolling on my back, which then consequently closes off my airway, making me wake up, or is it something else? I sometimes put the pillows on my forehead so that they don't make a bunch of noise; could it possibly be that instead?

Thanks.

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Added a 2nd post because of the 3 attachment limit.

[Khavoqi]

Hey everyone.

After some more digging and research, I think I've found the root of my problem; untreated FL's / RERAs.

In Jason (theLankyLefty's) most recent video, he went over RERAs, and how they can be really hard to detect in your data.

After going through my data again, I found (what I believe) to be tons of RERAs just lined up back to back to back.

This, in conjunction with recent articles and videos I've been watching from Barry Krakow, leads me to the conclusion that I'd probably benefit from Bilevel. It seems that as I turn the pressure up to try and solve flow limitations, I then get expiratory pressure intolerance, seen in downward sloping breaths. I've included various screenshots to show what I mean: https://imgur.com/a/wIFTpUg

Could y'all take a look through those screenshots and confirm that the dotted areas are actually RERAs?

Also, for getting a used, cheap bilevel machine, what websites would y'all recommend? In order to get a bilevel through my insurance, I'd have to do an in lab sleep study, something my insurance doesn't cover. I'd save a lot more time and money by just buying one outright than trying to use my insurance.

Thanks, and I look forward to your responses

[Sleeprider]

It really helps to zoom into the flow rate to a 3-4 minute segment where the inspiration waves are clearly visible. These images are nearly 20 minutes and just don't have the resolution needed for interpretation. I have purchased a Vauto over Craigslist in the past. Obviously you have to use a payment method to protect that purchase. The machines have gone up in price quite a bit since Covid, and the retail on this is now about $1775, but there are some deals out there. Keep an eye out on DotMed. Supplier #1 has 20% discounts fairly often, so get on their mailing lists. They do require an Rx.

[Khavoqi]

Hello again everyone.

First, the good news: I managed to get an AirCurve VAuto through my insurance. Hooray! 

Now, the bad news: I still have to find the right pressures.

Now, I will say right off the bat that I think the switch was good. For the first time, my breathing is starting to actually look somewhat normal; a lot of my flattened inspiratory peaks are disappearing now, and I have some segments of the night where my breathing is absolutely perfect. 

However, I'm still having a bit of a hard time figuring out exactly what pressures and PS I should be using.

Attached is the data from some of my nights. Would y'all mind taking a look through it and suggest different changes I could make to enhance the therapy? I'm still feeling pretty damn tired despite the switch. https://imgur.com/a/1qccLBz

Also, I do have an in lab titration scheduled for 10/17 in Dr. Barry Krakow's old clinic, out in New Mexico. Is there anything specific I should keep in mind going into the titration? Also, from y'all's experience, is it a good place to go for UARS? I've read some anecdotes on here saying that the new clinic head isn't as UARS focused and thorough as Dr. Krakow was. I also have a 10/30 titration scheduled with Dr. Jerald Simmons in case the New Mexico one doesn't work out.

Thanks,

Khavoqi

[Khavoqi]

Also, just a quick question.

In order to treat flow limitations, you increase IPAP (PS), whilst keeping the EPAP the same, correct? 

To my knowledge, this is correct; however, in LankyLefty's most recent videos, he said that you would need to increase both the IPAP and EPAP in order to successfully treat flow limitations.

Thanks.

[Gideon]

I'm with Sleeprider here. Lefty's approach on this is very old school, increase pressure to resolve issues.

Per ResMeds titration guide.
First increase EPAP to manage OA. Repeat as necessary.

Then increase PS to manage hypopneas, and flow limits. Repeat as necessary.

Your settings:
Mode: VAuto
Use min EPAP=4
Max IPAP= 15+, this doesn't matter much because you shouldn't hit this as you are really well managed.
PS=5, a bit better than 4 but either is fine.

Now comfort is king even if your numbers go up some.

Based on your numbers your therapy is excellent.

[Khavoqi]

Hello again everyone.

I was finally able to get an in lab sleep study done. Apparently, in addition to mild sleep apnea, I have over PLMD (Periodic Leg Movement Disorder), with over 65 leg movements per hour.

From what I've seen, it looks like my only real option from here is to go on medication. Low iron can cause PLMD, but unfortunately, my iron levels have already been checked out and are fine right now.  I was prescribed Pramiprexole, a dopamine agonist, but from the research I did online, it seems like it can cause augmentation and worsen symptoms over time.

Because of that, I decided to opt for Gabapentin, as it seems much more safe, and is even recommended as the first line of treatment by Mayo Clinic. However, I'm not really sure where I'm supposed to start for the dosage; right now, I have 30 100mg tablets, with me being recommended to take 1 a day. From what I've seen online, this seems incredibly low; however, info is really scarce on PLMD; all I can find is info for RLS (Restless Legs Syndrome).

Would anyone on here be able to help me navigate this? As I said, I can't really find any info pertaining to PLMD specifically, and I just want to get back to sleeping again.

I also attached my sleep study report and iron tests in case any of y'all are curious as to the results.

Thanks for the help!

-Khavoqi

[Khavoqi]

Follow up post because I couldn't edit the last one.

I forgot to include that I'm still just as tired, despite consistent usage of my CPAP at my titrated pressure. What's even weirder is that in my sleep report, it says my limb movements only led to 4 arousals during the entire night, even though I had over 400 during the course of the study. If they only led to 4 arousals, are my limb movements even a problem, or could it be something else that's causing my fatigue? I went to Dr. Jerald Simmons' lab out in Texas where they specifically test and treat for UARS by using a nasal cannula to measure negative pressure. Because of that, I seriously doubt it's anything airway related causing my fatigue. I'm just a little lost and confused as to what the next steps are. Feels like I'm in an endless cycle of finally finding "the solution", only for there to be some random new thing I have to figure out. Thanks again for the help.

[Sleeprider]

Going back to your last submittal of Oscar charts, it looks like you were using a fixed bilevel pressure of 12/5 (PS 7) and getting good results in terms of AHI. With that much PS there is no flow limitation, but I think it might be a bit of overkill. I don't know how to advise on the drug alternatives Pramiprexole or Gabapentin for PLMD. Do your research carefully. I have heard Gabapentin is disruptive to normal sleep and has neurological side-effects. I think I'd be inclined to first follow your doctor's recommendation of Pramiprexole. Feel free to start a new thread on PLMD and the use of either of these drugs to get better member input. Lots of folks here with experience I don't have.