Problem
My problem is two fold;
1. Fragmented sleep, due to many arousals, I do not feel mentally refreshed even though I have a very low AHI.
2. Morning spaciness, slightly fatigued, felt like I have been over breathing during the night and on some mornings my chest feels its been for a work out! (Blood gases messed up C02 too High or C02 too low!)
My history
I was scripted for a Resmed S9 Autoset, my initial settings were 6.6 to 11.4, I later tweaked this to min 9.6 to 11.4 and although my AHI reduced to on average of 4.5 I never felt rested. 99% of the AHI were centrals and hypopneas, all of events clustered so I could get 20 of them in space of hour, so I felt crappy and headachy the next day.
My clinic (UK) is just not interested any more and want nothing to do with me due in part to the average AHI being under 5.
After 5 months I decided to buy a Resmed VPAP Adapt initially using the quattro FX, with the initial settings of EPAP 6.6, min PS 3.0 max PS 8. My AHI fell to between 0.0 and 0.4, which is great however my sleep was still fragmented.
My first remit for the first couple of months of using the Adapt was to nail any leaks with the fx with a view to change masks after a month to the Innomed Hybrid and then nail leaks with that mask and then to tweak the setting further on the Adapt.
Further, I also bought a night vision camera and now know about my nocturnal sleeping, and there seems to be element of PLMD and hypnic jerks, itching going on and also I have a cmsd50+ spo2 meter and use Sleepy head software.
At the moment I am caught between a rock and a hard place, the reason simply is that I am using a Resmed S9 VPAP Adapt for which I was not scripted for and am I trying to titrate myself!!
Current therapy
I have now been using the S9 VPAP Adapt for 3 months, both the FX and hybrid leaks ranged between 3 to 12 l/s, and I am currently using the FX due to rashes caused by the hybrid.
Initially I thought PLMD and hypnic jerks/itching was the major culprite and although they may have some bearing, I think may be the setup of the machine may be causing some of these issues and arousals that affect the FLOW and cause instability. So over the course of past couple of weeks I have tweaked my setting and arrived at the following:
EPAP 6.2, min PS 3.4 and max PS 8.4, AHI ranges from 0.0 to 0.5.
95% IPAP around 13
Max IPAP around 14.5
Observations
Machine: The Adapt cannot differentiate between obstructive and central apneas, hypopneas, there is no recording of snore, flow limitations or patient/machine triggered breathing (PTB). So it is very much flying blind!!
Masks: The FX is a good mask, lite and small, however I have to use a chin strap and also use nasal dilators. So I searched for and found a mask with less hassle factor, namely the Innomed hybrid which I like, big problem I break out into a rash and I start itching!! (I use a mask liner, problem emanates from the nasal pillows, with adjustments made by fingers then touching other parts of face, contact dermatitis)
Arousals: I am a light sleeper, I have an average of 3 wakes a night that I am aware of and I surmise that I have multiple arousals that I not aware of as follows;
1. cpap based
a) Mask leaks, mask rashes and itching (allergy or contact dermatitis to silicone)
b) Machine type ASV more invasive, machine incorrect settings, pressure induced (either too low or too high)
2. Possible Respiratory arousals RERA's. Are these due to too low a pressure?
3. Suspected PLMD/hypnic jerks particularly in REM, these are worse if I have developed rashes and itching and if this
continues over several day my sleep deteriorates. A circular loop sets in were I get more and more itchy, ergo more tired!!.
It may be some of the PLMD's I am seeing are related to incorrect machine settings ie Too much pressure? or they may be entirely independent,
not sure!!
4. Facial twitching, eyes, raising eyebrows etc
5. Facial itches sometime body (linked with 1a)
6. Bed partner, every time she moves I move!!
7. Fibromyalgia/hypoglycemia
8. Normal change of position
It seems that there is a disturbance to my sleep every 5 to 15 minutes according to cross referencing with the camera and the Sleepy head flow rate.
Medications
I have been taking herbal tablets called Kalms sleep on and off over several weeks, these do help.
Treatment
I note that in general for the first 1.5 hours in particular that I will have some form of periodic or hyperventilation-hypoventilation breathing with either apneas or hypopneas, followed by many disturbance to the flow over the course of the night.
My wants
My personal view is that I think that that the machine is not correctly optimized and this translates into the following flow instability scenarios;
1. Hypo/hyperventilation which periodic breathing with fluctuation in Sp02. My blood gases seem messed up.
2. Apneas and Hyponpneas
3. Flow normal but reducing Sp02
4. Period were Sp02 drops to 90% to 92%, average Sp02 is 95.4%
I realise now that a poorly set up machine can cause the machine to work harder than it needs to and could therefore cause more arousals. Therefore I want a better optimised therapy/settings giving;
1. Reduced arousals
2. consistent 96% spo2
3. Less hypo and hyperventilation
4. No Sp02 lows of 92%
5. Improved flow stability
6. Refreshing sleep
How do I optimise my therapy to reduce arousals and hyper/hypoventilating? (Note that I realise that may be other conditions such as undiagnosed PLMD that may also affect my sleep!. Should I ;
1. EPAP Increase or reduce.
2. Increase Min PS
3. Increase Max PS
4. Change my settings to achieve 95% IPAP
Were should I start, perhaps the EPAP needs to be lower or needs to higher at 9.6?
Sleepyhead graphs
I would be very grateful for any one of you that has experience with ASV machines to have a look at the sleeyphead graphs and stats. So for example Minute Vent, Tidal volume do they look high etc, is there anything that looks out of place?
1. Last night using Quattro FX
2. Example periodic breathing or hypo/hyperventilating over several minutes, is my EPAP too low, or should increase min PS
3. Example uniform flow with pressure line acting/looking like a CPAP machine. In fact if the Adapt acted more like a CPAP, may be my flow would be more stabilized?
4. Example of head twitching
4. Example of PLMD (used Camera and watched led movement)
5 Example of normal flow but with reducing Sp02
Finally I do want to go back to the Hybrid full face (I VERY LOW LEAKS!!) and I have just bought some barrier cream for the face and below the nostrils.
Thank you again for your help.
