Scottish newbie cry for help!
**APOLOGIES THIS WAS MY ORIGINAL MESSAGE BUT HAD TO POST 4 THREADS BEFORE BEING ALLOWED TO SHARE LINKS**
Hello everyone and thanks for allowing me to join your community.
I'm now at day 70 of my CPAP journey and it certainly hasn't been easy. I feel like I’ve taken my therapy to a point whereby I would benefit from collective feedback on the best ways to help move/progress my therapy forward.
Over the weeks I have tried to increase my working knowledge on this subject. Whilst this has been by small incremental steps, i am still a long way off feeling confident with interpreting data comprehensively and competently (OSCAR & SleepHQ). I have made a conscious effort over this period, following guidance from the various other forums, to keep changes to a minimum - never easy when you become desperate for a good night’s sleep!
I feel I finally understand the principles around leaks but have struggled consistently to bring them under control (mouth breather); even using various methods to redress eg different masks, taping, chin straps, collars, positional therapy etc.. These tools were either used in isolation or as a collective therapy strategy. Taping did yield the best results over a few shorts windows, largely aided by shaving a +20yr old beard off - something I wasn’t happy with, but accepting of, to achieve optimal therapy. My problem with taping was comfort, feelings of claustrophobia, poor resting heart rate and a rapid decline in HRV within heart monitoring apps - not to mention maintaining adhesion. i have since reverted to the F40 FFM in the hope that it kerbs leak rates - i just need to overcome the next hurdle of an exceptionally dry mouth. Again, have tried various remedies to redress e.g. humidification, gels, sprays etc.
i was gifted a spreadsheet by another SHQ user who was kind enough to pull together the data for the first few weeks - for that i will be eternally grateful . Since then, i have religiously kept it up to date (while adding a few wee changes along the way) - all to identify patterns. I have tried to share the excel data over the last 70 nights however I’m not allowed.
I think I’m nearing the ceiling (possibly exceeded) the point whereby adding pressure isn’t going to help. I’ve struggled over the last few weeks with exhalation despite having EPR set at 3. Tonight, I'm proposing to drop that to 2 to see if it helps with reducing CA events but fear its impact on flow limitation.
My flow limitation remain stubbornly high and seldom drop below 0.15. I am also concerned about the erratic breathing patterns and shallow wave amplitudes. I moved onto to a fixed CPAP pressure of 15 (last 9 days) to see if that helped remove the peaks n troughs - but have seen little changes to wave structure/patterns or flow limitation. Despite having a relatively low AHI score I am also now really concerned with the volume of 'disturbances' showing in OSCAR (events <10sec). Last night i had 102 instances with >50% flow rate reduction. Couple this with the known recordable events (CA, OA, H) it is no wonder i feel exhausted. Unfortunately, my healthcare professionals have been useless, with zero guidance on settings etc. They obviously think posting out kit pre-set at 4/20 is providing an adequate service.
Would bi-level be a consideration? Would this mode help steady breathing patterns, help with flow limitations, help with UARS or RERAs?
Reading Resmed's Titration guidance for Bi-level i do appear to tick most of the criteria; see page 24 of the attached pdf.
In addition to this, i have now received confirmation of a mask fitting appointment for next week. What this appointment and the outcomes they generate remains to be seen. Please note my frequent mask changes have been solely driven by necessity due to either facial sores or attempts to control mask leaks. I currently don't have a preference of mask as neither nasal, FFM, cushion, pillow or hybrid have produced positive results for me - but could that be down to not having the correct machine??
Ultimately my objectives are to:
I apologise in advance with the volume of information I’m asking to be reviewed. It is hoped that by reaching out to yourselves, I will hopefully and finally be able to establish a solid platform to build from - and maybe help others at the start of their own CPAP journey. Is there is anything jumping out to you from the attached which cause concern? I’d been keen to hear your thoughts and opinions on any possible recommendations on setting changes or alternative methods of therapy mode eg bi-level, ASV or ST.
If you could afford me some of your precious time to review the attached, i would forever be grateful.
Thank you all for taking the time to read my post
**STILL NOT ALLOWING LINKS TO BE POSTED**
Hello everyone and thanks for allowing me to join your community.
I'm now at day 70 of my CPAP journey and it certainly hasn't been easy. I feel like I’ve taken my therapy to a point whereby I would benefit from collective feedback on the best ways to help move/progress my therapy forward.
Over the weeks I have tried to increase my working knowledge on this subject. Whilst this has been by small incremental steps, i am still a long way off feeling confident with interpreting data comprehensively and competently (OSCAR & SleepHQ). I have made a conscious effort over this period, following guidance from the various other forums, to keep changes to a minimum - never easy when you become desperate for a good night’s sleep!
I feel I finally understand the principles around leaks but have struggled consistently to bring them under control (mouth breather); even using various methods to redress eg different masks, taping, chin straps, collars, positional therapy etc.. These tools were either used in isolation or as a collective therapy strategy. Taping did yield the best results over a few shorts windows, largely aided by shaving a +20yr old beard off - something I wasn’t happy with, but accepting of, to achieve optimal therapy. My problem with taping was comfort, feelings of claustrophobia, poor resting heart rate and a rapid decline in HRV within heart monitoring apps - not to mention maintaining adhesion. i have since reverted to the F40 FFM in the hope that it kerbs leak rates - i just need to overcome the next hurdle of an exceptionally dry mouth. Again, have tried various remedies to redress e.g. humidification, gels, sprays etc.
i was gifted a spreadsheet by another SHQ user who was kind enough to pull together the data for the first few weeks - for that i will be eternally grateful . Since then, i have religiously kept it up to date (while adding a few wee changes along the way) - all to identify patterns. I have tried to share the excel data over the last 70 nights however I’m not allowed.
I think I’m nearing the ceiling (possibly exceeded) the point whereby adding pressure isn’t going to help. I’ve struggled over the last few weeks with exhalation despite having EPR set at 3. Tonight, I'm proposing to drop that to 2 to see if it helps with reducing CA events but fear its impact on flow limitation.
My flow limitation remain stubbornly high and seldom drop below 0.15. I am also concerned about the erratic breathing patterns and shallow wave amplitudes. I moved onto to a fixed CPAP pressure of 15 (last 9 days) to see if that helped remove the peaks n troughs - but have seen little changes to wave structure/patterns or flow limitation. Despite having a relatively low AHI score I am also now really concerned with the volume of 'disturbances' showing in OSCAR (events <10sec). Last night i had 102 instances with >50% flow rate reduction. Couple this with the known recordable events (CA, OA, H) it is no wonder i feel exhausted. Unfortunately, my healthcare professionals have been useless, with zero guidance on settings etc. They obviously think posting out kit pre-set at 4/20 is providing an adequate service.
Would bi-level be a consideration? Would this mode help steady breathing patterns, help with flow limitations, help with UARS or RERAs?
Reading Resmed's Titration guidance for Bi-level i do appear to tick most of the criteria; see page 24 of the attached pdf.
In addition to this, i have now received confirmation of a mask fitting appointment for next week. What this appointment and the outcomes they generate remains to be seen. Please note my frequent mask changes have been solely driven by necessity due to either facial sores or attempts to control mask leaks. I currently don't have a preference of mask as neither nasal, FFM, cushion, pillow or hybrid have produced positive results for me - but could that be down to not having the correct machine??
Ultimately my objectives are to:
- Establish best mode of therapy e.g. APAP, CPAP or BiLevel (AirCurve 10 VAuto Bi-Level)
- Establish a bespoke working set of pressures
- Establish better amplitudes to wave structure
- Improve breathing pattern consistency
- Establish more consistent rounded shaping to breathing patterns
- Reduced flow limitations <0.1
- Reduce leak rates into single digits
- Increased deep sleep
I apologise in advance with the volume of information I’m asking to be reviewed. It is hoped that by reaching out to yourselves, I will hopefully and finally be able to establish a solid platform to build from - and maybe help others at the start of their own CPAP journey. Is there is anything jumping out to you from the attached which cause concern? I’d been keen to hear your thoughts and opinions on any possible recommendations on setting changes or alternative methods of therapy mode eg bi-level, ASV or ST.
If you could afford me some of your precious time to review the attached, i would forever be grateful.
Thank you all for taking the time to read my post
**STILL NOT ALLOWING LINKS TO BE POSTED**
