[Treatment] AHI lower than ever, still struggling in my late 20s

[davigalindo]

Hi guys,

I've been doing CPAP therapy every day for around 4 years now, but only recently I began to monitor its effectiveness through OSCAR. I'd like to add some important information first: I live in a developing country, and even though my family is well-off in my country's terms, I'm still subject to a high cost of living compared to my income, and lower-than-average instruction levels from health professionals. While I'll try to get the best available professional help, unfortunately, most of the hard work is up to me, and I'd rather avoid unnecessary expenses.

I had surgery to treat sleep apnea when I was younger (two septoplasties and a UPPP), but my average AHI without CPAP still fell under the severe category. When I first started therapy, I was given a rather outdated CPAP that didn't have a detailed display, and I couldn't access its SD data through OSCAR. My AHI was rarely under 13, which I mistakenly understood as an improvement and therefore I didn't pursue a solution. Obviously, I was always tired and I went through a massive depressive period, going through different medications and procedures that didn't work or made me worse. During the pandemic, I got used to binge drinking alone on the weekends, unaware of how it affected my sleep (of course, I knew it did, but I didn't know the details because the doctors are often reticent).

When I changed to Airsense 10 Autoset earlier this year, I had to change the mask model twice. The first was a Philips DreamWear nasal pillow, and the one I'm using now is a Philips DreamWisp nasal mask. My AHI dropped to around 1-3. However, I still couldn't feel its benefits entirely, and the display was always pointing to leaks, even though I couldn't see where they came from.

As it happened with many of you, after a while the executive dysfunction built up and I got an ADHD diagnosis. Of the two drugs available to treat the disorder here, I only tolerate Vyvanse, which is very expensive. It's been a life-changer, though. My depression and anxiety have mostly lifted and I have enough energy to do my chores, while also changing my bad habits. I'm eating well, I'm exercising whenever I can, and I reduced my drinking frequency. I'm finally finishing college after postponing it for more than half of the course length. If I time the Vyvanse correctly, I sleep earlier. However, there are still days in which I wake up more tired than I usually do and the medication doesn't work - instead, I get into a grumpy, foggy state, but of course, I can't sleep on a stimulant. To make matters worse, the physical symptoms of sleep apnea, such as high blood pressure, sexual dysfunction, and extremely deep dark circles under my eyes, are still there and are worsened by the amphetamine. My memory is still lacking. These symptoms take a huge toll on my mental health and self-esteem.

After waking up unwell for a few days without getting any relief from Vyvanse, I decided to do some titrating by myself. I'm very concerned and it's a little overwhelming to dig into all of the information. I did a lot of Wiki reading, but I'm afraid I misinterpreted some things and took some hasty measures. I went to a sleep technician today to fix a faulty humidifier heater, and I got a replacement machine while mine is off for evaluation. She had a lot to say about some basic things that I messed up when assembling the hose, and that tampering with the settings wouldn't cut it. To be honest, although I think there are things that need to be addressed in my OSCAR data, that's exactly what I was doing, I wasn't titrating in an informed manner but rather chaotically. So I ask for your help.

   
Saturday 12 (an ok-ish night compared to the rest of the week)

   
Sunday 13

   
Monday 14

Additional info:

- From the information that I found lurking in the forum, I suspect that I have UARS and some form of positional apnea. Although I'm now a little overweight (81 kg, 178 cm: 25,6 BMI), most of the time since my OSA was diagnosed I had a normal BMI. Since I'd rather not shave my beard or use a full face mask, I bought an extremely tight chin strap to avoid mouth leaking, and it has helped a lot in that aspect, but as of now, it's difficult to assess its usefulness because I changed many settings during my attempt to titrate. I think it's very uncomfortable, and I feel suffocated when using it. Nevertheless, I had an episode of periodic breathing and my AHI rose to severe levels, so I changed the settings back.

- I have a problematic pattern of binge drinking and abusing some prescription drugs, but I'm on my path to abstinence. Right now I only take Vyvanse accordingly, and I'm tapering off Klonopin (I'm on 0.25 mg). I do, however, occasionally relapse with alcohol, and I upped my caffeine intake over the last couple of weeks. The reason I won't post my last sleep study is because I was under the effect of alcohol, a higher dosage of Klonopin, and an atypical, melatoninergic antidepressant called Valdoxan, which I think isn't commercialized in the US. The test showed a reduction in my REM sleep with extremely long latency and a long N3 stage, but considering the circumstances, it's hard to tell if any of it was there before this day. The oxygen saturation came back normal, and my earlier sleep studies didn't show many abnormalities besides the obstructive apneas and hypopneas.

Thanks a lot.

[staceyburke]

Look at you leak rate chart. The gray area is.large leaks- if it is a large leak the leak is so high the Cpap can NOT work. It can not record most apnea events and basically it is not doing anything for you at all.

The pressure chart shows flat top events which are mouth leaks. You have to take control of these leaks before you do any thing.

Some people use full face masks others tape their mouth shut. Whatever works.

[jwest]

Hey,

I read through your story twice. You shared a lot, so I will try to structure my comments and ask of you to structure yours back.

1) How much data did you have on your SD card when you put it into OSCAR for the first time? Longterm trends can be helpful.

2) I've been navigating the sleep-medicine-surgery sphere for nearly a decade, and I can tell you confidently that there are relatively few surgeons who know what they're doing. Most surgeons follow (still) what's called the Riley-Powell protocol, developed at Stanford med in the 90s. Obviously we've learned a lot since then, and all reputable top surgeons have tossed out that protocol. I'll attach an image below. Sounds like your surgeons adhered to it. What year did you get the surgeries? I think it's unheard of for patients to receive soft-tissue surgery, like you did, and bring their AHI from severe to normal.

3) Make sure you're changing your PAP menu settings from nasal mask to full-face mask, etc.

4) Humidifiers typically crap out, for example, through developing a very small crack, and then they leak, so you likely just need to replace the reservoir (humidifier). Don't let them scam you.

5) Sab 12 de ago: All your poor flowrate coincides with the leaks. Fix the leaks. Full-face mask, taping lips, taping lips plus chinstrap, taping lips plus cervical collar, etc. You need to do this before anything else. Therapy is blunted with leaks, as the configured pressure does not deliver what is says it does, because you lose some amount of it to the leak. Same thing for dom 13 de ago. Same with last day. These leaks alone could be responsible for your not feeling good, as you have so many. We won't know until you can get rid of them.

6) One of the first places your body deposits fat is the base of your tongue, so being healthy, normal weight is imperative.

7) Your O2 saturations came back normal with an AHI of over 30 or am I not understanding something?

[davigalindo]

Thanks for the answers!

I returned it to the original settings, wore the chin strap, and lowered my pillow. I woke up much better, with an AHI of 2.79 and a LL of 0.69. I still think that there's a lot to be improved, but the important thing is that I was very discouraged and now I know it works if I fine-tune it.

Just answering the questions:

1) I had around 273 days of data and there certainly was an improvement after I began taking Vyvanse, at least in sleep time and AHI. Unfortunately, I can't attach these data right now because the new CPAP came with a different SD that wasn't wiped out... So I just imported it and now I have 6 more years of data that aren't mine lol

2) My first septoplasty was when I was 14, the following surgeries happened when I was 19, that is, at the end of 2015. I figured out that the surgeries weren't useful, I'm just glad there weren't any long-term effects (I think), although I had them a long time ago and I don't know if I'd be better without them.

3) Could you explain to me why? I'm using DreamWisp, it's a nasal mask.

4) I hope they don't scam me. Health companies can be a little shady here. The heater appeared to be faulty, though, but I don't know if that's because the reservoir was leaking water onto it.

5) The large leaks were mostly gone last night, but sometimes the leak rates still border 20 l/m. Not sure what to do about this, I'll look for the Wiki article about taping although sometimes the tape brands are very different here and I don't know where to begin.

6) I'm working on it. During the beginning of the year my weight was much worse, but I managed to lose around 7 kg (a little more than 15 pounds). I just need to lose 2 more kg to enter a healthy BMI, but to reach the ideal weight for my age I would still need to lose around 10 kg, so it's gonna be some work. I think I'm on the right path, though, I changed my eating habits completely and I'm going back to gym.

7) I think I haven't made myself clear, sorry. My O2 saturations came back normal, but my AHI was 1.9 in the sleep study (myAir and OSCAR pointed to a 0.27 AHI). The leak rate this day was almost 90%, though.

Here's last night data:

   

Is there a way to lower the AHI even further and improve the flow limitation? Thank you!

[staceyburke]

Good job on the large leaks, now you can work on making the therapy work but you must keep your leaks down.  You have 2 things that will help you.  First is the Flow limits, flow limits are apnea just like the Oa and H events but they are not counted in the AHI.  I have how all apnea events are categorized in my signature at the bottom of my post.  Flow limits are controlled using 
EPR (exhale pressure relief) and to set it up you need to change a couple settings.

EPR set full time to 3
min pressure to 7

 The second thing is You are having some positional apnea.  Positional apnea can NOT be controlled by pressure changes.  You have to find out what position you are getting into and cutting off your own airway.  Have you changed your sleep position?  Sleeping on your back?  Using more (or new) pillows?  These things can cause positional apnea by chin dropping to your sternum and cutting your airway.  Think of it of a kinked hose – nothing can get through – you have to unkink the hose…

IF you can’t make a simple change like changing to a flatter pillow helps then you will need a collar.  I have a link to collars in my signature at the bottom of the page.  It shows people who are not wearing a collar and the SAME person wearing a collar.  There is a huge difference between the two.

You can see your positional apnea in the events flags - it shows when Oa and/or H events grouped together.

[davigalindo]

Good job on the large leaks, now you can work on making the therapy work but you must keep your leaks down.  You have 2 things that will help you.  First is the Flow limits, flow limits are apnea just like the Oa and H events but they are not counted in the AHI.  I have how all apnea events are categorized in my signature at the bottom of my post.  Flow limits are controlled using 
EPR (exhale pressure relief) and to set it up you need to change a couple settings.

EPR set full time to 3
min pressure to 7

 The second thing is You are having some positional apnea.  Positional apnea can NOT be controlled by pressure changes.  You have to find out what position you are getting into and cutting off your own airway.  Have you changed your sleep position?  Sleeping on your back?  Using more (or new) pillows?  These things can cause positional apnea by chin dropping to your sternum and cutting your airway.  Think of it of a kinked hose – nothing can get through – you have to unkink the hose…

IF you can’t make a simple change like changing to a flatter pillow helps then you will need a collar.  I have a link to collars in my signature at the bottom of the page.  It shows people who are not wearing a collar and the SAME person wearing a collar.  There is a huge difference between the two.

You can see your positional apnea in the events flags - it shows when Oa and/or H events grouped together.

Thanks for the quick answer! I didn't know that flow limits cause awakenings, so I'll certainly look for the EPR setting. I tried it two days ago, but I messed with my pressure, the minimum was 5.4 and the maximum was 7.4, so I think maybe it was too drastic.

Regarding positional apnea, I usually sleep on two pillows. Yesterday I took the thinnest one and left the thickest because if I did the other way around it was a little uncomfortable. But I'll keep trying.

I'll also take a look at the cervical collar. I love that there's a guide to it, but I'll probably have to adapt to the choices I have since the descriptions don't use metric measurements. Again, thank you!

[staceyburke]

Measurements for the collar is just the distance between your chin and your sternum.

EPR is exhale pressure relief


If you are not using the EPR your min is the inhale and exhale pressure.  If you use EPR the inhale is the min and the exhale pressure is the min - EPR.  However, you must have the min to at least 7 to get use EPR 3 because the lowest the machine can go is 4.  So using your 5.4 and EPR 3  -   5.4-3 is still exhale of 4 (the lowest it can go) while min 7 - EPR 3 would also be 4.  7-3 is 4.

[davigalindo]

Hello again. I'm a bit worried (perhaps a little too worried).

I spent the whole afternoon feeling like my throat muscles were too relaxed, and I was very sleepy (not exactly fatigued, but sleepy) and somewhat in a low mood, despite having taken the usual Vyvanse and some caffeine. Sometimes I exhaled too heavily. Perhaps that's a Klonopin side effect, but I have some experience with 0.25 mg and I don't feel significant effects, not to mention that I take it before sleeping. My tapering schedule ends in 10 days.

When I arrived home around 5 PM, I decided to take a nap, first with the flatter pillow, and later with the thicker one. The thing is, whenever I was falling asleep, I'd make a snoring noise and I'd feel my throat closing, followed by a little rush that would wake me up. In OSCAR, it flags only one hypopnea event, though, but there are flow variations happening around every 5 minutes. It all happened in less than 50 minutes, but it was enough to have me concerned. I highlighted the part in which I was actually trying to sleep.

Is there anything that I could change in the settings to fix that? My medium pressure yesterday was 9.54, so perhaps it's the case of increasing the minimum pressure from 7 to 9 or 10?

   

   

[jwest]

2) I realize you mentioned your financial constraints given your living circumstances and country of residence, but down the road, getting the proper surgeries could prove fruitful. I want to be clear that I'm not saying anymore than that. You should consult at least a handful of the top surgeons before fixating on any ideas, and, ideally, if PAP therapy can reach a point of satisfaction, then it's always what is recommended. Surgeries come with risks, but they can also come with lifechanging results. You're just very young, you mention you're not overweight, and so, especially if other unilateral variables are in your favour for a good outcome, it could be a really beneficial course of action.

3) Because the machine needs to know how much extra pressure to deliver to compensate for the mask type. Deliver 10cmH2O pressure for a nasal mask and a full-face mask is not the same thing. If you don't do this, then you inject a confounding variable into your comparisons, which we want to keep as comparable, and therefore actionable, as possible.

5) What was different that got rid of the leaks? Leaks aren't bad in and of themselves; they are only bad in that the skew the meaningfulness of your data and can be playing a role in disturbing your sleep. In other words, hypothetically, if your mask is leaking some egregious amount, you could still be getting the right amount of pressure, provided the leaks are consistent, but then it would be like you need to cause that amount of leak with every other pressure/variable change if you wanted to glean truth from the data. I might be confusing you more than making things make sense, but the gist is that you want leaks to be zero, because it's the best reference point/they don't become a variable in the data.

8) A couple things. One, a nap is not representative of your night's sleep, so we have to assign perhaps less importance to it. I believe you are having issues with the EPR. Lots of people do. It often causes too much CO2 removal, which kills your respiratory drive, which can result in exactly what you're describing. I've personally gone through it, and so have many others. Let's slow down here. Look at your charts, specifically the flowrate charts. Which ones look the cleanest to you? Also, of those days, which ones did you feel best? I highly recommend you start keeping track of your subjective quality of sleep, which is a feature now incorporated into OSCAR for each day. It will give us valuable insight.

My opinion is: let's slow down. Look at what charts are cleanest and also consider which days you felt best. If you don't know which days you felt best, then let's just go back to the cleanest charts. I think a good starting point is putting you on 6-7cm pressure, no EPR, and focus on eliminating your mask leaks. Turn APAP off.

[davigalindo]

2) I realize you mentioned your financial constraints given your living circumstances and country of residence, but down the road, getting the proper surgeries could prove fruitful. I want to be clear that I'm not saying anymore than that. You should consult at least a handful of the top surgeons before fixating on any ideas, and, ideally, if PAP therapy can reach a point of satisfaction, then it's always what is recommended. Surgeries come with risks, but they can also come with lifechanging results. You're just very young, you mention you're not overweight, and so, especially if other unilateral variables are in your favour for a good outcome, it could be a really beneficial course of action.

3) Because the machine needs to know how much extra pressure to deliver to compensate for the mask type. Deliver 10cmH2O pressure for a nasal mask and a full-face mask is not the same thing. If you don't do this, then you inject a confounding variable into your comparisons, which we want to keep as comparable, and therefore actionable, as possible.

5) What was different that got rid of the leaks? Leaks aren't bad in and of themselves; they are only bad in that the skew the meaningfulness of your data and can be playing a role in disturbing your sleep. In other words, hypothetically, if your mask is leaking some egregious amount, you could still be getting the right amount of pressure, provided the leaks are consistent, but then it would be like you need to cause that amount of leak with every other pressure/variable change if you wanted to glean truth from the data. I might be confusing you more than making things make sense, but the gist is that you want leaks to be zero, because it's the best reference point/they don't become a variable in the data.

8) A couple things. One, a nap is not representative of your night's sleep, so we have to assign perhaps less importance to it. I believe you are having issues with the EPR. Lots of people do. It often causes too much CO2 removal, which kills your respiratory drive, which can result in exactly what you're describing. I've personally gone through it, and so have many others. Let's slow down here. Look at your charts, specifically the flowrate charts. Which ones look the cleanest to you? Also, of those days, which ones did you feel best? I highly recommend you start keeping track of your subjective quality of sleep, which is a feature now incorporated into OSCAR for each day. It will give us valuable insight.

My opinion is: let's slow down. Look at what charts are cleanest and also consider which days you felt best. If you don't know which days you felt best, then let's just go back to the cleanest charts. I think a good starting point is putting you on 6-7cm pressure, no EPR, and focus on eliminating your mask leaks. Turn APAP off.

Hello again! Thanks for the answer, I took it into consideration. I had already tried a 6 cm pressure on the CPAP mode a couple of days ago, and not only it wasn't comfortable but the AHI raised to a severe level. So yesterday I changed the pressure range to 9.4 - 10.4 cm with a 3 EPR and went to sleep with the chin strap, and my AHI was 1 and the leak rate was 10 l/m. I think these are great numbers, and I didn't feel the suffocating feeling I mentioned before. Unfortunately, yesterday I forgot to insert the SD in the device, so I don't have the exact OSCAR measurements. This is the information I got from the display and myAir app.

As for myself, my mood is better overall and I didn't have to pump myself with caffeine to feel like I could do things, but I'm still brain-fogged and clumsy, and the physical symptoms remain. I'm being patient, however, as there are probably some things else to optimize, and I suppose these symptoms take a little longer to stabilize. I got a Nexcare tape and I'll try it today, and the cervical collar is expected to arrive on Tuesday. I'll keep updating.

About my financial constraints: they are mostly about CPAP expenses, which aren't covered by insurance. The public health system here isn't bad and the private system is actually kinda great, and in addition, my insurance covers most of my needs. Could you expand on the surgeries you're referring to (maybe by PM, if it isn't allowed to post publicly)? I want to discuss this possibility with my doctors.

I know two things for sure: I feel much more scatterbrained now than I did when I first got the surgery, and in the last few years since the pandemic, I feel that my jaw is constantly open inside my mouth, which perhaps has something to do with my non-extracted wisdom teeth pushing the other teeth. I look constantly angry, even if I don't feel that way, because when at rest my lips protrude like a pout of sorts. My dentist even mentioned that I might have TMD and a malocclusion, but I didn't bother too much because I didn't associate this with a possible worsening of my sleep apnea. The only thing I knew is that my wisdom teeth and my jaw were hurting. I'm actually in the process of scheduling an evaluation with an oral surgeon, so any extra information would be appreciated. I'll probably have to wear an Invisalign brace after this.

(About 3), I think that you understood that I got a full face mask, am I correct? It's a nasal mask)