[Treatment] New to CPAP but keen to learn - Please could you help with results and Q's?

[Jay51]

I can relate Justin.  Early on I hated high (and even medium pressure).  When I did a straight cpap trial, I used 5 as a constant pressure.  It seemed ok to me (6'2 male).  Most people need higher - 7 or 8 at least not to feel air starved.  I didn't feel air starved at 5.  

Fast forward to today:  I can tolerate a higher epap.  My Evo usually is around 4 or 5 epap when I go to sleep, but hits 7 or 8 when sleeping.  From many OSCAR naps, around high 7's or medium 8's is my best epap.  

Said that to say this also:  in time I hope you get used to a little higher pressure.  You can move it up I think on your machine in 0.2 increments.  Nice and slow like I did.  It has gotten easier to tolerate a bit higher pressures (even ipap a little higher for me). 

And stick with Gideon's suggesions .  He will keep you on track.

[JustinWoods]

Hi all,

I wanted to check-in and share some updates with you all as I’ve come a long way since June (2023).

I had some great guidance from folks including:

Gideon - “Based on your chart I think you could use a nasal mask.” & “Min pressure should never be less than 4+EPR to allow the EPR to work”
Jay51 - “Take time to get used to increasing minimum pressure”

I enclosed an OSCAR chart from a few nights ago as last night I only had 2 hours before taking the mask off.

   

So far I have:

• Done a lot of reading and research on this forum, Reddit and YouTube
  
• Spoken to the doctor who has referred me to a sleep specialist in the UK. NHS so waiting times are long. I was told to contact them if I hadn’t heard back on next steps in 3 months (due November). Private medical insurance (BUPA) don't cover sleep apnea.
  
• Had a very successful back surgery = less pain and painkillers
  
• Moved to a Resmed F30 Full face mask (Medium then Small) and now a N30i Nasal Mask
  
• Used the Resmed Airsense 10 Autoset machine every night building up tolerance and usage
  
• Turned off Ramp and now at a pressure of 6 - 13 cmH2O with EPR 3
  
• Bought and used a new pillow for better neck alignment and cut-outs for when wearing Full Face mask. Also a hose hanger.
  
• Bought and using a Viatom wellue o2 ring
  

How do I feel?

• I feel better being on therapy than without. Less exhaustion, less fatigue (ability and motivation to do stuff). I do generally feel more tired / sleepy though these days, maybe because my body has access to better sleep?
  
• Less brain fog and cognitive impairment
  
• My heart feels less tired and my chest feels like it’s less tight
  
• Genuinely feel more relaxed and less anxious
  
• I look forward to sleep more and dread the CPAP less
  

What I am still struggling with:

• Waking in the night 2-3 times still - sometimes to go to the toilet, sometimes (new) mask leak, other times on the back of a sleep disturbance or maybe pressure increase
  
• Flow limitations look to be on the high side
  
• My pulse rate awake and sleeping is still high (Range is 64-108 BPM, Average 86)
  
• Occasional sweating head and wet pillow
  
• Still a generalised tiredness, exhaustion, underlying anxiety
  
• Doctor keeping an eye on cholesterol (statins), pre-diabetes (blood tests), liver function (blood tests)
  
• Still no access / guidance from a professional (although you guys have been an amazing help). Doctor doesn't understand, private medical won't cover, NHS waiting lists are extremely long
  

Currently Trying:

New mask

Last week I bought a N30i nasal mask. Even though I was a self-proclaimed mouth breather this has been remarkable. Top-mounted (unicorn) hose, smaller (nasal) contact area and less bulky make a big difference to fit and comfort. The PAP pushes past any restrictions in my nose that made me a mouth breather and I think I’m able to naturally keep my mouth closed while I sleep (although maybe the charts show different?). Antihistamine nasal spray also seems to help.

Adjust pressure

My ears now tolerate higher pressures. I now start at 6 cmH2O with ramp off. It’s also easier to tolerate 6 cmH2O into my nose than into my mouth.
Gideon mentioned a fixed pressure of 8, happy to try this next if the new graphs also support that thinking.
I have noticed some nights where I experience aerophagia so mindful of that.

Access to a Bi-PAP machine

I was able to pickup a low usage (2700 hours), low price (£500), local (15 miles) Resmed Lumis 150 ST-A machine. I know it’s not for the condition that I may have BUT it gives us the option to experiment with Bi-PAP if that is helpful. I’m keeping an eye out for a VAuto which I believe is more appropriate but this was a spontaneous purchase (if you’ll excuse the S mode pun). 

I’m sticking with the Resmed Airsense 10 Autoset for the moment, I don’t want to change machines / settings without guidance and intentionality.

Thanks for reading. Where should I go from here?

[Jay51]

Great job with the patience.  Progress.  2 hours is better than nothing.  

In regards to the high flow limits:  you are not hitting your max pressure, so that looks ok.  You have EPR at 3 full time which is good.  I see your pressure starts at 4.  A lot of your flow limitations look like they happen at the very beginning of your chart with pressure of 4.  Also, raise your min from 6 to 7.  Then after you get used to 7, you can go slowly, increasing it by 0.2 when you feel ready to.  If you can start with it higher, it could both help you fall asleep faster and stay asleep longer.  8 or 9 or possibly even higher may eventually be your target for your Min EPAP.  Time will tell. 

Good plan.  Try to optimize this current machine before even trying the new machine (bipap).  Keep tweaking the mask if necessary, too.

[JustinWoods]

Jay51, thanks so much, this means a lot to me. I hope you are doing well.

Yes, 2 hours is definitely better than nothing and I'll continue to stick with it - I am seeing results.

Interesting about the pressures. I thought I had it set to 6-13 (and it shows as 6 on the display when I start it up) but I will definitely check this again. If it is, it's unintended. If not, I'm tracking well to your guidance anyway. 

I'll raise min pressure inline with your feedback. I feel confident I can go to 7-13 tonight without issue and raise gradually from there.

I'll continue my journey of not using ramp and starting directly on treatment pressures - I'm better able to tolerate both now that I've been using the machine for a while.

I am happy with the new mask, just still adjusting the fit (c.1 week into a nasal).

Thank you for guiding / confirming the approach - It gives me a lot of confidence and I'll report back when I have some results / updates.

[JustinWoods]

Hi folks,

Some updates since my last post.

Updates:
- I believe I have swollen turbinates on one or both of my nostrils at times, mainly at night. I can see and feel them.
- As a result mouth taping and a nasal mask aren't working for me as I can't breath well through my nose with turbinates and feel suffocated easily
- Have had to move from a nasal mask to a Full Face F30i which has been the most comfortable FF mask yet, but the most leaky
- I have gradually upped my pressures over the past 3 months and am now at 9-11 cmH20, EPR 3, no ramp
- Snoring is minimal to non-existent - great!
- I'm seeing less obstructive apneas and more (treatment emergent?) Central Apneas with these pressures
- Many apneas coincide with mask leaks (makes sense given reduced pressure)
- I have an air purifier in the bedroom and also use a PulseOx (not shown on graph)

   

Health:
- Started running (couch to 5k) to get back into cardio fitness after spine operation
- Not overweight but have some to loose and get fitter after being sedentary
- Still struggling with falling asleep at night, exhaustion during the day, excessive sleepiness after lunch, not tired before bed, brain fog, aching heart muscles when waking, anxiety, sweating. Better quality sleep on CPAP but certainly still not enough duration.

Next steps (would you agree?)
- Higher pressures have brought down obstructive apneas, I think I need to go higher on IPAP to perhaps 12/13 in time?
- Monitor Central Apneas looking for a reduction over time
- Continue to work on mask leaks / fit
- Engage an ENT to look at turbinates and also my throat as I believe I have narrow airways exacerbating my condition

Anything else you'd recommend? Thanks so much!

[Jay51]

Mask Primer  Here is the mask primer to help reduce leaks.  Congratulations on your success.  Your plan looks good IMO.  

Your CA's don't look bad IMO.  The cluster of CA's was probably when you were either waking up, or you were awake and were trying to fall asleep again.  

You can try the higher pressures, but balance them against increasing CA's.  

Your EPR is set to 3.  You can try lowering it to 2 or 1 or even turning it off if you get higher CA's with the new higher pressure.  But EPR helps with comfort also, so you may want to keep it at 3 full time like it is now.  

I had inferior turbinate reduction surgery a few weeks ago and can breathe better out of my nose.  

Using ramp is usually frowned upon, but you can try your machine's ramp feature for a night or 2 if you are still having trouble falling asleep.  It may work and it may not work for your though.  My machine starts at low pressures and ramps up pressures when I am asleep.

[JustinWoods]

Jay, thanks so much for your continued guidance and personal transparency - it means a lot to me.

This forum has been a massive help especially as referals to a sleep clinic in the UK are unbelievably slow (I'm >6 months into a waiting list) and my private medical insurance doesn't cover sleep apnea at all. 

I feel like my settings are getting dialled in, I've found a mask I can work with, and I now need to work on other factors that are more in my concious control (sleep hygene, routines etc). I will explore reducing EPR too as part of that fine tuning.

My current focus is on treatment efficacy whilst I try to get medical experts to help me understand the cause.

Regarding ramp, I don't think it's my machine settings / comfort that are causing me not to fall asleep but rather an issue with (possible) insomnia / anxiety before going to bed. I just don't get tired before bedtime but I'll keep exploring here. 


Great to hear your recent terubinate reduction surgery happened and has helped - I wish you continued healing and success with it.

Thanks again. Your kindness and help has been a big comfort this year and helped me achieve these results so far (last night I managed 4.45hrs duration and an RDI of 1.05).

[Jay51]

Thank you for the kind words, Justin.  You have put a lot of effort into your own therapy and are starting to reap the benefits.

[JustinWoods]

Hi folks, 

Thanks for reading and your help.

   

Updates from the last 3-4 months:
 
- IPAP is 8.4-8.6 cmH20. EPR = 0/off. 
 
- I am almost at the fixed pressure of 9 that Gideon mentioned I should try to reach. Exploring very small changes to min/max IPAP (hence strange IPAP numbers) to see if I can reduce aerophagia and reduce Central Apneas
 
- Obstructives almost eliminated, centrals have risen to almost the same overall RDI
 
- I seem to get aerophagia (enough to wake in night) when pressures go above 8.4 cmH20
 
- I’m managing much longer durations on the machine 6-8 hours each night
 
- Mask leaks with F30i are still a challenge as a stomach/side sleeper and potential chin tucker.
 
- Nasal breathing issues prevent me from effectively using a N30i/P30i (I own and have tried both). Mouth taping with nasal mask feels like I’m not getting enough air - not sustainable. 
 
Updates with Doctor:
 

• Prescribed Promethazine for occasional use to help with insomnia (for both getting and staying asleep).
  
• Prescribed Rinaspray (Ipratroprium Bromide) and Flixonase (Fluticasone Propionate) for my nose.
  
• Recommended switching anxiety meds from Venlafaxine to Mirtazapine. A common side effect of the Mirtazapine is increased drowsiness to help with sleep but the increased day time sleepiness was horrific so having to revert.
  

 
Not noticing meaningful benefits from the nasal sprays or promethazine.

NHS Referral:
 
I finally (after 7 months) had my referral phone call with an NHS sleep expert (but she was in respiratory medicine) who told me:
 
⁃           WatchPAT wasn’t a proper sleep study - but didn’t want to refer me for Polysomnography. Likely because;
⁃           I was largely doing a good job with my self-acquired CPAP machine, equipment and help from this forum
⁃           Offered for me to send my CPAP SD Card in to them for analysis (waiting list of c.4 months)
⁃           Recommended the sleepio app for insomnia
⁃           Agreed that my Epworth / Stop-bang scores were higher than my statistics/metrics would typically indicate
⁃           She seemed to have no idea about UARS and had a bias on obstructive apnea
 
Disappointing. Almost feels like the effort to try and treat myself then deprioritised more meaningful help I could be given by the NHS.
 
Private referral:
 
I have an initial consultation with Vik Veer, a well known UK Private/NHS ENT surgeon and sleep disordered breathing specialist on 30th July. 
I’d like understand and treat why I am such a prolific mouth breather (day and night) and work out what can be done there.
 

I feel slightly better than last year but still desperately tired and exhausted. I’m struggling to run my own consulting business and lead a normal life and it’s taken a massive toll on my relationships and lifestyle. I’m not enjoying life which feels like an endless cycle of not sleeping and trying to make a living. Not sure what else I can be doing?


Next steps:

• Continue to work on mask leaks / fit
  
• Work out how I can reduce my central apneas - I have access to a Lumis 150 ST-A if that gives us Bi-PAP options. I could even update it to VAuto firmware if needed (I have a computer science degree)
  
• I can share deeper pulse rate / oximeter / movement stats from my Wellue ring
  
• Chase NHS and Private options to see if I can bring consultations forward
  

Thanks for reading and your help.

Fun fact: Through all of this (16 months), not once has a medical professional looked in my nose or throat.

[Jay51]

Great job taking numerous actions to improve your therapy.  I have found that the amount of effort that I have put into my therapy is the amount of return on my investment.  

The only thing in your charts I see is a 2.72 inspiration time vs. a 2.0 expiration time.  This may be false.  If true, you have some resistance in your airway.  

EPR is a way to combat this with your machine, but the tradeoff can be increased central apneas (which you have a few in your charts).  Since you have tried both ways, it looks like fixed pressure is bet for your sleep length and comfort and how you feel the morning after.  

You can certainly try ST (A) or VAUTO in the future if you feel this combination isn't acceptable.  It would help just for reference.  

As long as your SPO2 is relatively acceptable to you (usually average in the mid 90's and lows only to low 90's or so, then that already seems acceptable IMO.  What I have read, when it dips below 90, it is time to take a more serious look at it.  

I have seen a few videos from Vic Veer posted here.  After you see him, post what he says.  I would like to see what he says.  IMO you are getting the best of the best for sleep apnea treatment here at ApneaBoard though.