[Diagnosis] Am I just an apnea wannabe?

[redvinesfamily]

TL;DR - I am not sure if my diagnosis through an online company was valid or if I'm treating something that doesn't exist.

Hello! TIA if you have any thoughts to share with this newbie. I have read many posts over the last few months, so I have tried to educate myself.

Me: 43-year-old female, 5'4", 135 lbs, Type 1 diabetes w/no complications, no snoring
2000 - self-motivated upper jaw shortening surgery (LeFort 1 osteotomy). Performed by an inexperienced surgeon who destroyed my septum.
2001 - Septoplasty/rhinoplasty. Left with a moderately-sized hole in septum
I use Mucinex, Nasacort, and saline to reduce inflammation to retain my sense of smell, which worsens in the winter. 
Dealt with chronic sleepiness for 20+ years. Here's what I've tried: 
- daily exercise, eye mask, earplugs, blue-blocking glasses, weighted blanket, temperature control, vitamin D, sub-clinical thyroid treatment, higher blood sugar control, Omega 3s, testosterone pellets, keto diet, low-carb diet, Modafinil, Armodafinil (still take 1/2-1 pill daily).
-history of trouble transitioning between dreams and reality, particularly while under stress

PCP recommended overnight o2, and those results (with some desats) led to a home test with a sleep doc. He apparently diagnosed me with insomnia and said I don't have apnea. I have never had trouble falling or staying asleep. I can nap three times a day if I get the chance and still sleep at night.

I started having heart palpitations last year. I believe they are associated with the Modafinil and caffeine I use to stay awake. Out of desperation, I tried a Lofta test. Diagnosed with mild sleep apnea.

I got my PCP to order the CPAP, and I've tried it for a week. There are pretty close to zero obstructive events. I admit, I wake up feeling more refreshed (weird feeling!!) and having more energy the past few days, though my sleep has been far more disrupted and I certainly don't feel perfect. But I also don't see much evidence of obstructive sleep apnea on my charts. I realize this could be because the machine is preventing them, I guess?


Anyway, I'm waking up with dry, puffy skin around my eyes. Between the mask and the cervical collar I'm using to prevent leaks (I've discovered I also do best while taping my mouth IN the mask), and the eye mask, earplugs, boob pillow (yes, it's a thing, and it's fabulous), weighted blankets, insulin pump, and continuous glucose monitor, I am not the Sleeping Beauty my husband married.

Am I using this machine as a placebo, or is it actually doing me some good? If not, I may need to chuck it. Thanks for any/all input. 

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[staceyburke]

Welcome this site has many very good people that will help you.

Your flow limits are high. Flow limits are small apnea. You can see the apnea classification at the bottom of the post. Flow limits can cause sleep problems- sleep problems- Arousal, stopping from going into deep sleep.

To help with flow limits we use EPR (exhale pressure relief). What it does is to lower the exhale pressure by the settings of EPR. Yours is set to 3 - good don’t change it. BUT you need to raise the min pressure, why?

Because the very absolute lowest pressure your machine can be is 4. And that is what you have it set. So the EPR is not able to do anything I- the machine is already at the lowest setting it can go.

I would make the min pressure at 8. That will help your flow limitations.

[redvinesfamily]

Thank you! I will try that. I have been nervous about messing around with the low pressure setting because I've read that having the pressure too high can induce central apnea events. And since that's all I seem to have, I thought I might actually cause a problem where there is no problem by doing that. Is there a place where I can read about the mechanism behind why that should help?

[staceyburke]

sorry I have been away from the house today.  I do not have anything to read about control of flow limits - Only what I know works and my own experience.  If you look at other peoples advice it is to increase the EPR to limit them.  As I said you have EPR at 3 but it is not doing anything because the min exhale pressure can not go below 4.  Moving the min to 8 will give it room to work and make your exhale pressure 5 which is just one more than the min of the machine.

As for centrals the difference between the high and low (the larger the difference) the more chance for centrals.  Some people make the machine to a straight cpap machine with (for instance) min 9 max 9 EPR0  That makes for NO difference between high and low.  The setting you are on that the widest difference the machine can go min 4 Max 20.  That is the lowest and highest number that can be set on your machine.  You have set yours to the worst setting for centrals BUT fortunately you have few if any centrals.  But look at your flow limits - there are a bunch... And again flow limits are apnea only small apnea.  In my signature it gives how the O, H and flow limits are calculated.  O has the largest obstruction, H is the next largest and flow limits are the smallest. So you DO have obstructive events only they are not large!

Again, sorry I was not here to write back when you asked the question.

[staceyburke]

Another thing that I should mention is you have Ramp set at 4 for 45 minutes.  When you are using ramp the machine never goes above 4 and you are not getting any therapy - it needs to go to the higher number to treat the apnea.  You took off the mask and it started 3 times in total.  That means 3 45 minute periods where you are not getting any help at all. 

You had a total of about 6 hours and 30 minutes with the machine on. 3X45 mins put you on the ramp 135 minutes you were on ramp and during your nights sleep you with without any therapy for 2 hours and 35 minutes of the 6 hours 30 minutes you should have had therapy.  In other words about 1/3 of the time!!

You need to shut off the ramp or limit it as much as you can.  Almost all the people who have been on pap therapy for a while quite using it all together.

[kappa]

Ramp=2 is the "auto" value (correct reporting of this is addressed in future OSCAR release), so the 45 minutes isn't relevant and this is reflected in the pressure graph - pressure increases rapidly in response to flow limitation once stable breathing is detected. According to ResMed, Auto ramp on AirSense 10 will increase pressure once it detects:
a) 30 breaths of stable breathing (roughly 3 minutes)
b) 5 consecutive snore breaths, or
c) 3 obstructive apneas or hypopneas within 2 minutes

You could increase your ramp and minimum pressures to 7 (assuming that that is comfortable for you).

[Ratchick]

Hi

As has been said, you do have a lot of flow limits, and even if you don't have apneas, you doesn't necessarily mean you don't benefit from the PAP.

While yes, in some people, treatment can trigger some central apneas, this is easily fixed by altering the settings, in most cases. So I'd definitely consider switching on EPR full time and giving that a try, as has been suggested. And depending on how you feel, I'd probably turn off the ramp (if you can go to sleep with the full therapy pressure).

[Gideon]

You asked why. Your machine was set to 4-20 which is what we call wide open. It was done under the false assumption that it would automatically find the best pressure for you. Even Auto machines need to be optimized.

CPAPs are a single pressure machine. Add in EPR and you effectively have a more advanced BiLevel machine, though one that is limited to the amount of EPR available. In this BiLevel world we have two pressures we manage, exhale and I have. In both exhale is limited to 4 cmw. It is actually this exhale pressures that splints open your airway. This treats obstructive apnea. To treat hypopnoea, RERAs, flow Limits we increase the inhale pressure. The difference between inhale and exhale pressure is called pressure support (PS). On your machine this difference is called EPR. So by setting your min pressure to 8 we are setting your starting exhale pressure to 5, just 1 above where you are currently at. This typically makes it much easier to breathe and better managed the events that you are prone too.

Yes the CPAP is helping you. If you had a BiLevel machine such as the VAuto I would have you increase your PS to 4 from the 3 it is currently

[cathyf]

Ramp=2 is the "auto" value (correct reporting of this is addressed in future OSCAR release), so the 45 minutes isn't relevant and this is reflected in the pressure graph - pressure increases rapidly in response to flow limitation once stable breathing is detected. According to ResMed, Auto ramp on AirSense 10 will increase pressure once it detects:
a) 30 breaths of stable breathing (roughly 3 minutes)
b) 5 consecutive snore breaths, or
c) 3 obstructive apneas or hypopneas within 2 minutes

You could increase your ramp and minimum pressures to 7 (assuming that that is comfortable for you).

One of the "rules" of sleep studies and apap is that "it's impossible for the machine to tell whether you are awake or asleep because it can't measure your brain waves." But if you have a lot of flow limits (I do too) then that's not true! The A10 is a very sophisticated machine for detecting flow limits, and in my case -- and your case too -- basically if you are asleep then you are having flow limits. Because of how the algorithms work, you have the perfect built-in ramp in that matches the machine behavior perfectly to your sleep pattern -- when you are awake the pressures stay low and as soon as you fall asleep they zoom up and whenever you wake up the pressure falls. So ramp set to "auto" IS ramp set to "off" -- this behaves exactly the same for someone who has lots of flow limits!

When you have EPR set to 3, then your pressure on expiration tracks a constant gap of 3 below your pressure on inspiration. EXCEPT that the machine physically can't deliver a pressure between "off" and 4. So if your pressure on inspiration is below 7, then your pressure on expiration is pegged at 4 and your EPR gets "squashed" down. The only way to maintain an EPR of 3 at all pressures is to set your minimum pressure to 7. (I would argue that the settings menu should set EPR first, and if EPR is 1 then the machine shouldn't let you set the minimum pressure below 5, EPR is 2, min pressure shouldn't set below 6, EPR 3 means that the minimum pressure won't go down below 7. I would call that a user interface problem that the machine allows settings that are impossible.)

What I am curious about is that your machine lets your pressures go so low in the presence of all of those flow limits. My machine is not a "for her" model so I have no personal experience with that option -- maybe that's the difference?
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[redvinesfamily]

 It is actually this exhale pressures that splints open your airway.  This treats obstructive apnea.  To treat hypopnoea, RERAs, flow Limits we increase the inhale pressure.  The difference between inhale and exhale pressure is called pressure support (PS). On your machine this difference is called EPR.  So by setting your min pressure to 8 we are setting your starting exhale pressure to 5, just 1 above where you are currently at.  This typically makes it much easier to breathe and better managed the events that you are prone too.

Yes the CPAP is helping you.  If you had a BiLevel machine such as the VAuto I would have you increase your PS to 4 from the 3 it is currently

Got it. The exhale/inhale part was the piece of understanding I was missing. I did try putting the minimum at 8 last night, and for whatever reason, I woke up and had a hard time convincing myself I could breathe well. I am going to fiddle around and try a different mask tonight. I have felt unable to breathe with the nasal mask both times I tried it, but maybe starting with a higher pressure and low humidity will help?

 I certainly could try to get insurance to trade out the machine for a VAuto, or look for a used one if it might help. I am sure I've spent over 20K trying to feel better over the years. What's another grand? 

One of the "rules" of sleep studies and apap is that "it's impossible for the machine to tell whether you are awake or asleep because it can't measure your brain waves." But if you have a lot of flow limits (I do too) then that's not true! The A10 is a very sophisticated machine for detecting flow limits, and in my case -- and your case too -- basically if you are asleep then you are having flow limits. Because of how the algorithms work, you have the perfect built-in ramp in that matches the machine behavior perfectly to your sleep pattern -- when you are awake the pressures stay low and as soon as you fall asleep they zoom up and whenever you wake up the pressure falls. So ramp set to "auto" IS ramp set to "off" -- this behaves exactly the same for someone who has lots of flow limits!

What I am curious about is that your machine lets your pressures go so low in the presence of all of those flow limits. My machine is not a "for her" model so I have no personal experience with that option -- maybe that's the difference?

Thank you for all this good info. When I zoom in on the Flow Rate graph, it looks like once there is some semblance of something rounded on top of the "wave," the pressure begins to go back down. These "waves" are very ugly, though - they all look like a plateau and then a steep spike.