CPAP not helping

[KarSans]

16yo male BMI - 17.3
Background -
Started experiencing symptoms around mid 2017
Officially got diagnosed in early 2018 and went on cpap for trial for 2 months
Had a DISE(sleep endoscopy) in mid 2018 and they found the cause to be a floppy epiglottis
Got epiggolottectomy but didnt improve symptoms



I have been on CPAP for 2 years but still experiencing symptoms. From the time I started experiencing the symptoms in 2017 it has been all downhill, I would wake up every day to find my brain more foggy, my thinking slowed down and other cognitive issues. Fatigue and tiredness started after 6-7 months. Then when I finally started pushing to get a sleep study done after googling my symptoms and researching about sleep apnea, The doctors made fun of me for telling them I might have sleep apnea even though my BMI is in underweight territory.
I told my parents to get it anyway, the results came back with a AHI of 11 and was diagnosed with mild sleep apnea.
The doctors were still incredulous but I found a doctor who believed me eventually and then we got a DISE and did the surgery.


I don’t think CPAP has made me feel like I was recovering, it only slowed the cognitive decline/worsening brain function. I have no problem in wearing the cpap for the whole night and can fall asleep with it easily.

Sleep apnea has completely changed my personality and cognitive abilities. I used to be witty and a quick learner. I developed a nasal allergy or something this January and since then my nose has been blocked which is making my symptoms worse and my number higher. I have tried nasal decongestants and do nasal rinsing every night.

I have no mental health problems, if anything I think Sleep apnea has made me more of a laid back person, I used to be stressed out and anxious about little things pre apnea but now I think the damage it has done to my brain which makes my thoughts fuzzy and thinking unclear and very slow has made me relaxed?I think. This is the most important thing I need to tell every doctor I goto because they think I have some “unaddressed anxiety issues” and refer me to a psychiatrist.

Here is my data from yesternight

Thank you in advance for any insight or advice anyone can provide.

[chunkyfrog]

Bump. (Pushed this to the top so more will see it.)
Hang in there--somebody will be along to give more help than is in my skill set.
On weekends we get bombarded by trolls--sometimes we miss somebody. Sorry about that.
Note to the forum--this poster has been on cpap for TWO YEARS.

[Respiration99]

G'day KarSans.

There seems to be a persistent view in some of the medical community that you can only get sleep apnea if you're an overweight middle-aged male. Total bollocks of course. Congratulations to you for pushing back and insisting you get the appropriate testing and treatment.

That big cluster at the start of the night lasted about 20 minutes - do you recall if you were awake at that time or possibly dozing? I sometimes get clusters like this as I like to read in bed, but then I doze off, my head drops forward and the windpipe is sufficiently compressed to start apneas and hypopneas. It's usually fixed by an elbow to the ribs from SWMBO. So consider how you go to sleep, what position you're in, and whether you need some help to keep your chin up. Many people swear by soft cervical collars. Alternatively, adjust your pillow (or get a new pillow) so you can sleep with your head tilted very slightly backwards and your neck slightly extended.

The central apneas (clear airway) may be pre-existing, or may be the result of the applied pressure (treatment-emergent). Do you know f your original study showed centrals? A lot of the centrals are occurring during that big cluster, so it's quite possible that if you can get rid of the cluster then the centrals will decrease as well. You might also try turning the flex off, as that can sometimes contribute to the problem.

I'd consider raising the minimum pressure to around 9.5, which is just above your median. I think the machine is unable to raise pressure when needed as the presence of a central apnea causes it to hold pressure down. In addition, Philips machines are a bit less aggressive in raising pressure anyway, so you need to give it a head start to reduce the number of obstructive events.

I know I was supposed to hide the piechart but sleepyhead is stuck in full screen mode and wont let me go to settings.

Press F11 to get out of full-screen mode. Or preferably, update to Oscar V1.1.0, which has a new module to process Philips data and also turns off the pie chart by default.

[Respiration99]

One other thing I should have mentioned is the leak rate. Although your machine can probably cope with the leaks, they may well be disturbing your sleep. It would be a good idea to work out where the leaks are coming from and reduce them as much as possible. It could be that your mouth is falling open - in this case you can practice sealing your mouth with your tongue, or else use a chin strap to help keep your mouth closed. Alternatively, you may need to update your mask.

[palerider]

One other thing I should have mentioned is the leak rate. Although your machine can probably cope with the leaks, they may well be disturbing your sleep. It would be a good idea to work out where the leaks are coming from and reduce them as much as possible. It could be that your mouth is falling open - in this case you can practice sealing your mouth with your tongue, or else use a chin strap to help keep your mouth closed. Alternatively, you may need to update your mask.

The leaks are minimal.

[palerider]

Like most people with a Respironics machine, minimum pressure's too low... try 10.

[Respiration99]

The leaks are minimal.

I'd say they're more than minimal. In any case, even minimal leaks can disturb your sleep if the air is blowing into your eyes or causing face farts.

[KarSans]

G'day KarSans.

There seems to be a persistent view in some of the medical community that you can only get sleep apnea if you're an overweight middle-aged male. Total bollocks of course. Congratulations to you for pushing back and insisting you get the appropriate testing and treatment.

That big cluster at the start of the night lasted about 20 minutes - do you recall if you were awake at that time or possibly dozing? I sometimes get clusters like this as I like to read in bed, but then I doze off, my head drops forward and the windpipe is sufficiently compressed to start apneas and hypopneas. It's usually fixed by an elbow to the ribs from SWMBO. So consider how you go to sleep, what position you're in, and whether you need some help to keep your chin up. Many people swear by soft cervical collars. Alternatively, adjust your pillow (or get a new pillow) so you can sleep with your head tilted very slightly backwards and your neck slightly extended.

The central apneas (clear airway) may be pre-existing, or may be the result of the applied pressure (treatment-emergent). Do you know f your original study showed centrals? A lot of the centrals are occurring during that big cluster, so it's quite possible that if you can get rid of the cluster then the centrals will decrease as well. You might also try turning the flex off, as that can sometimes contribute to the problem.

I'd consider raising the minimum pressure to around 9.5, which is just above your median. I think the machine is unable to raise pressure when needed as the presence of a central apnea causes it to hold pressure down. In addition, Philips machines are a bit less aggressive in raising pressure anyway, so you need to give it a head start to reduce the number of obstructive events.

I know I was supposed to hide the piechart but sleepyhead is stuck in full screen mode and wont let me go to settings.

Press F11 to get out of full-screen mode. Or preferably, update to Oscar V1.1.0, which has a new module to process Philips data and also turns off the pie chart by default.

Thank you all for your replies.
I was definitely awake till 1:30-2 so dk why the machine picked up those.
I have done 2 studies and neither showed any significant centrals.
I bumped up my pressure to 11 and woke up with a bloated stomach, I have increased my pressure before to these levels when my nose was completely blocked and it takes 1-2 day before I get used to this pressure.
Last 4-5 days my nose gets so blocked by morning that when I stand up I feel shortness of breath. Its weird I dont feel like I am not taking enough air when I am laying down but I do when I stand up, this lasts for about 3-4 minutes.
I didn’t experienced this today. Today I am feeling slightly better than yesterday. Idk if this is because of the pressure or just one of those days. That’s another thing I would start getting better sleep for a week or two without changing anything and other weeks or months eveythings just goes back to shit. I think my nose contributes a lot to this
EPR -2
Humidity -0

[Respiration99]

Your apneas are coming in clusters which is often a sign of positional apnea. You can see that even with the machine running at maximum pressure the apneas keep coming. I'm fairly sure this is caused by chin-tucking. Your head drops forward, your chin drops to your chest and the force on your windpipe produces too much resistance for even a high CPAP pressure to push through. Get hold of a soft cervical collar to help keep your chin up and your neck in a slightly extended position - you see a tremendous improvement in your AHI.

[milboltnut]

Your apneas are coming in clusters which is often a sign of positional apnea. You can see that even with the machine running at maximum pressure the apneas keep coming. I'm fairly sure this is caused by chin-tucking. Your head drops forward, your chin drops to your chest and the force on your windpipe produces too much resistance for even a high CPAP pressure to push through. Get hold of a soft cervical collar to help keep your chin up and your neck in a slightly extended position - you see a tremendous improvement in your AHI.

agreed

[ChicagoGranny]

Get hold of a soft cervical collar to help keep your chin up and your neck in a slightly extended position - you see a tremendous improvement in your AHI.

Good idea. It's a cheap trial ($7.00 - $10.0) to see if it works. A cervical collar does wonders for my CPAP therapy.

soft cervical collar

Technically, they are called foam cervical collars. Most brands come in two different firmnesses - soft and firm (Indentation Force Deflection).

[Miss Emerita]

Just a note to say you sound like a remarkable person -- able to advocate for your health even in the face of shocking ignorance and dismissiveness from your doctor.

The advice to try a collar is terrific. A couple of other ideas: if your pillow is fairly high, try using a fairly flat, firm pillow. (Alternatively, you might benefit from a pillow with a hump along the bottom to support your neck.) If you sleep on your back, try to get yourself to sleep on your sides.

Please keep us posted. People here will most definitely be eager to help you. (And thank you, chunkyfrog, for bumping this.)

[Wulfman...]

If I had reports that looked like that, I'd feel horrible, too.
It's obvious that your pressure settings aren't cutting it. Where did you come up with those settings?

My advice for the short term is to study your reports and see what the pressure is when you're having the fewest events, and set the pressure (fixed/straight) for that value. There's no guarantee, but I would suggest it as a place to start. It's obvious that ranges of pressures aren't your cup of tea.
It used to be a rule of thumb that for "PRESSURE INDUCED" Central Apneas the pressure should not be allowed to go over 10 cm.........because that was what the threshold typically was. It's also the reason that the old ResMed Auto machines used the "A10" algorithm. The "A10" was the label for the pressure limitation of 10 cm. Those old ResMed Autos didn't like to try to treat apneas above 10 cm., but it might be a plan to try to experiment with your pressure settings.

Good luck.


Den

.

[Miss Emerita]

A few more thoughts, KarSans.

The bloat in your stomach is from "swallowing" air -- called aerophagia. It is pretty common. I would suggest that you go down to a minimum of 8.5, which is .5 above where you were with your first post. If that is comfortable, go up to 9. Wait another night or two and if all is well, creep up to 9.5. You get the picture. If you hit aerophagia along the way, back down .5 and wait a few more nights. The body will often make the necessary adjustment if you go up more gradually with the pressure.

You mention having tried raising the pressure with your nose blocked. CPAP machines don't generate enough pressure to blast open a blocked nose. When your nose is all stopped up, you need to use a full-face mask. Lots of people with seasonal allergies keep a FFM in the closet for the times when their allergies are bothering them; then they switch back to their nasal mask or nasal pillow mask when their allergies clear up.

A good over-the-counter medication to try is Flonase, which reduces swelling in the nasal tissues. It doesn't work right away, so keep using it for a couple of weeks before deciding whether it is helping you. My allergist also has me using a prescription spray called Azelastine, and a pill at night called montelukast (Singulair). Your regular doctor could prescribe those for you if he or she thinks it'd be worth your trying them.

One other thing: the machine doesn't know if you're awake or asleep. So if you're awake and breathing irregularly -- something we all do while awake -- it will respond in the same way it does when you're asleep. For example, when we're awake, we often hold our breath if we're concentrating on something or exerting ourselves. If you do that for 10 seconds or more with the machine on, it's going to flag an event. What to do about that? Nothing; just ignore events when you know you were awake. Don't pay any attention to them.

[KarSans]

10 may - I fixed my pressure to 10 and there was not any improvement in the numbers. I changed to auto after waking up at 5.

11 may - Changed nothing but tried to sleep with my head slightly hanging back and chest stretched.

I can’t get hold of a soft collar right now as most of you suggested because of a complete martial law where I live.

I use a memory foam pillow right now. It is high and not flat. Should I try using a flatter pillow?