High AHI with CPAP

[Rage]

Will try turning the EPR off tonight with the same stuff on. Regarding the collar, I am still waiting on it; deliveries have crawled to a halt as my area has a delivery backlog issue due to Covid.

Regarding the ASV... I really do not know if I can get an ASV machine on the NHS, but this is something I will be discussing when I speak to my Sleep Tech on the next review.

I have been doing a lot of research and evaluation this last week, trying to go through my health history now that I know I have mixed Central and Obstructive Apnoea, I believe it could be associated with some underlying health issues (i.e. Hypermobile Ehlers Danlos Syndrome or Multiple Scoliosis)  I was diagnosed with Fibromyalgia over ten years ago and my Rheumatologist would not do further tests to either confirm my fear of it being something else or rule it out as they said they are all very similar and a diagnosis won't make any difference to any treatment, of which I just have pain relief.

This discussion happened a year or so before my sleep study confirmed my Mixed Apnoea, Catathrenia/Sleep Groaning & Movement Disorder; maybe now they might take me more seriously as both hEDS and MS have strong links to Central Apnoea.

[Gideon]

FYI, if it comes down to it, you can get an ASV from the US. Let us know and definitely stay in touch.

[Gideon]

Roll a towel around a mens tie and place the towel under your chin, not the best solution but it should help.

[Rage]

Hello Again,

The AHI in my last post was 64.88 and after all I had tried I began to feel that it was time to just go back to basics and try to change some stuff up, so I have been tinkering with my settings a little and I made a little breakthrough.

I do not know why but one night I decided to lower my Humidifier from level 5 to 3, my AHI dropped going from 57.80 to 48.09. As my AHI has a tendency to go high and drop from one night to another, I was not overly hopeful it was due to my changing the level, but the next night I dropped it again to level 2 and my AHI dropped to 27.46. I decided to leave it as level 2 another night, and my AHI went up to 33.24.

The next night I dropped again to level one and my AHI was 38.12, I kept it at level 1 for one more night and had an AHI of 23.51, the lowest reading I have had whilst adjusting the humidification.  In hindsight, I wish I had tried one more night at level 1, but I was so happy at the reading I decided to turn off the humification the next night and had a nasty reminder to move slower because my AHI jumped up to 49.92; although some 30 points off my highest readings, it was disappointing to see such a jump.
 
I decided to leave off the humidification to see what would happen the second night without humidification, I also turned my heated hose down from 27ºC to 25ºC, and I had an AHI of 33.53 but experienced rainout in my Nasal Pillow mask.

Last night was my third night with no humidification and with the heated hose at 25ºC, I have posted the result below. I had rainout again and think I will have to raise the hose temperature back to 27ºC tonight as it's not very pleasant.

   

I have a telephone consultation tomorrow with my Sleep Technician, and as my results show I am having far more Central than Obstructive events, I feel I am not going to get adequate results with the CPAP I have.

Does anyone have any ideas, advice, questions to ask or things to discuss with them from the results I have posted that I may have missed? I have a list of questions and things to discuss, but it would be good to have other perspectives.

[Rage]

Just a quick update in case this helps anyone in a similar situation.

As per my last post, I had the telephone consultation and my Sleep Technician was at a loss with what could be done for me, so arranged a telephone consultation with my main Sleep Consultant.
I have just had my telephone consultation, and I am definitely a complex case! He is going to schedule more sleep tests done with the Neurological team at another hospital that are better equipped to help solve why I lash out and to try ASV.

[Deborah K.]

Yay!  I'm praying that they get you an ASV.  It looks like that is exactly what you need.