I cannot fall asleep with my bipap/home ventilator. Hypoglossal nerve stimulator?

[Jay51]

[attachment=37887][attachment=37887]

---

[attachment=37889][attachment=37889]

---

[attachment=37891][attachment=37891]

[Jay51]

Thanks for that Dave.  Thanks again Sleeprider.  I am going to hit the sack and go to sleep.  I can usually fall asleep at night when I put my head on the pillow within minutes.  Problem is waking up 5 or so times each night "buzzing".  Daily naps I can fall asleep right away usually also. (sometimes "buzzing" occurs during daily naps, too). Daily naps either one or 2 and usually 30 to 45 minutes.  I plan on checking back here in the morning.   All comments welcome.

[Sleeprider]

ASV only has 4 settings and the rest is automatic. All the machines you have been issued up to now are intended to treat severe pulmonary disease. The ASV treats the obstructive and central apnea we know you have. Just set it in ASV auto mode at default settings, and I think you'll be amazed.

[quiescence at last]

Usually apnea is worse on your back, head facing up. Some of us have best results on our left side. If you really only feel comfortable on your back, try pointing your head to the left, say at 45 degrees.

I will have to reread your posts, to see which side is most often buzzing. Left or right. I assume it is not tingling, like if foot goes to sleep, right?

QAL

[Jay51]

Thank you again Dave and Sleeprider for all the info and experience in pointing me towards the right machine for me:  the ASV.  

QAL.  Uncanny how this stuff works. I sleep mostly on my back.  When I wake up I notice my head is tilted in about a 45 degree angle to the left - I guess body trying to correct for the lack of oxygen.  

The last few months I have been trying to force myself to only sleep on my left or right side.  I have not taped a tennis ball to my back yet, but I am spending more time on each side sleeping at night.  I get the "buzzing" sensation in all 3 positions when I wake up.  Doesn't matter if on back, or either side.  Also, when laying down (always on my back) for a 30 to 45 minute nap, I get the "buzzing" sensation either in the middle of the nap or at the end of the nap, too.  

I first noticed the "light buzzing" in my left arm only (shoulder all the way down to my hand) about 4 years ago.  And only when I would wake up during the night.  About 2 years ago or so I started noticing it more in the back of my skull and neck area.  Also some in my chest area.  It occurs only upon waking during the night, goes away within a few minutes, and I go back to sleep.  

Being a retired Occupation Therapist (we were referred to in the medical field as the "McGyvers.")  Some duct tape, foam, whatever and we could make something more adaptable to a patient.  It seems to me that sleeping on my stomach would cure the obstruction totally because gravity would then be pulling the tongue forward and keeping the airway open.  I asked the RT (Respiratory Therapist) this week if I should try this and she thinks this not work.  

Because of old injuries, I naturally migrated to sleeping on my back for comfort.  I used to sleep on my side (my left side exclusively) because I could tell it stopped reflux.  Only problem, I slept on my left side so much, that once my left shoulder dislocated (actually popped out of it's socket). It hurt tremendously.  I popped it back in.  But instinctively I was sleeping exclusively on my left side. 

Maybe I should have trusted my gut instinct more.  I actuallly called the RT the day after I received the ST-A and left a message for her asking if I accidently got the wrong machine.  She never returned that phone call.  I knew the very 1st night I tried it something major was wrong (wrong machine or settings way off the mark).  I felt the same way the 1st night I tried the Astral 100.  First night I tried for over 2 hours to fall asleep with it, but to no avail.  I tried again 2 nights later for 3 hours to fall sleep with, but could not again.  

Which brings me to one last thing.  As of today, I have made around 60 attempts to fall asleep with the ST-A and Astral 100.  (57 with ST - A and 3 with Astral).  The DME company would call me each week to check on how I was progressing with my pap therapy.  I told them something is seriously wrong, I absolutely cannot fall asleep with it.  The answer I kept getting over and over and over and over was, "Just try to wear it more during the daytime, and eventually you will be able to fall sleep with it."  I instinctively knew that this was false.  I tried by best to "force" the ST-A and now the Astral to work.  I ended up giving up each time.  Practically impossible.  I have kept jumping through the hoops and doing what I have been told since insurance is covering everything, but know I feel like I am actually getting somewhere.  I have just about zero data to even analyze at this point (almost 100% of my approximately 40+ hours using the machine have been when I am AWAKE.  Never while asleep.  The one time I fell sleep with the ramp on for maybe 10 minutes or less (when when ramp turned off it immediately woke me up), I can't remember what day that was for my myair data.  My problem has not been lack of effort, but getting some bad advice along the way.  I do believe everyone is trying their best to help me (RT, ENT (sleep specialist), PCP).  It sounds (Dave and Sleeprider and QAL) have the practical experience to solve these problems faster).  Thank you very much.

[Sleeprider]

Once you get on ASV, there are many tools we can work with to help you become accustomed and comfortable with it. I have recommended default settings to start, but since you seem to be easily disrupted by sudden pressure support when the machines try to push air into you, we can work with lower pressure support to try to "nudge" you into taking a spontaneous breath. There are several people here that use that strategy successfully. The main The thing is we will be able to get a bit of data to at least learn what it is that disrupts your sleep. The biggest advantage to ASV is that it is designed to enable spontaneous breathing, and it will back-off on pressure support quickly once it detects that. The ST-A and Astral are both slower to respond and work to average out volume over several breaths, while the ASV can respond on a breath by breath basis. The ST usually fails because it is fixed pressure with a timed backup, and just delivers the same pressure all the time. It is best for supplementing respiratory effort and volume for COPD patients.

[Jay51]

Thank you for that Sleeprider.  That seems to explain why I accumulated so much air in my stomach in a fairly short period of time using the ST-A also (when I would get very relaxed and close to falling asleep).  I have noticed less air in my stomach with the Astral (probably because of lower pressure settings).  The noise from the air going into my stomach was actually audible to me.  I felt it, too.  

If the SVA could "teach" me even "encourage me" to start spontaneously breathing more when I should at night (or at least assist and help me instead of creating more problems in this area), that would be fantastic (and not jolt or startle me wide awake like the ST - A did).

[SarcasticDave94]

I'm hearing evidence that you're suffering from Central Apnea and possibly A-fib on the cardiac side. I'm not a doctor so a grain of salt here with my comments.

If the gurus here think it may help you for the time being until you get ASV, the Astral 100 should have a straight CPAP mode. I'm sure the Astral 150 that I was looking at did. My thought is just go straight CPAP as a bandaid mode for a short time till doc gets an ASV into your hands. IMO you're being over-treated with a non invasive ventilator like this.

[quiescence at last]

. Haha. I was going to say something similar to Dave. I was going to say increase your ramp time to 120 minutes, so you can sleep for 120 Minutes before it wakes you up. The other thing he said about setting it on CPAP only, make some sense. Hopefully you can pick out a comfortable pressure that will just stay constant. If your ramps start is at 9, then maybe make 10 or 11 your constant setting. See if you can sleep through the night.

QAL

[Jay51]

Thank you for that Dave.  I found a manual for the Astral 100 online.  I found the day after the 1st night I tried to fall asleep with it over 2 hours unsuccessfully.  I searched for it to try to figure out why I set off the alarms on it about 20+ times in the 2 hours I tried to fall asleep.  Contacted RT at DME.  She came by my home here twice last week to get the alarms to finally stop and readjust the pressure again.  She asked me before we started what pressure I thought would be good to start with (based on the 15 max ipap on the ST-A).  I said as low as the machine will possibly go.  She said the Astral is not set with numbers like 15 max ipap though.  Uses a different formula she said.  One of them was tidal volume I remember she said.  She did that.  I realize cpap mode will be different than than bipap vent. - only incoming air at a steady rate.  When I did the overnight sleep study in the hospital, I remember the RT started me out on a cpap machine at the lowest pressure it could be set at and then gradually increased it over the night.  I was able to fall asleep in the lowest pressure cpap machine after 3 hours.  I woke up several times (I heard the water condensation "swishing" in the tubing) and was able to go back to sleep maybe twice again also.  
At least the RT doing the study was right in telling me I needed a bipap long term and not a cpap.  I did not have to try cpap any more.  
Sleeprider really explained what is happening in an above post.  The ASV attempts to encourage spontaneous breaths ever so gently and can figure out my erratic pattern of slower, then faster, then medium of breathing, too.  It will back off when it senses I am starting to breathe instead of trying to ram 15 max ipap down my throat to get me to breathe (with the 1st part of that 15 pressure usually going into my stomach because I am so obstructed).  And the timing of the ST-A not being able to sync with my personal erratic central cheyne stokes breathing rates.  Those are the 2 main things.  If I can get a machine that won't ram the air down my throat (and stomach) and jolt me awake; and be able to both figure out and keep up with my erratic central cheyne stokes rate, that should do the trick.  I should be able to both fall asleep and stay asleep then.  
I am going to try to see if I can decifer how to change to straight cpap mode.  This Astral is a little easier on me though than the st-a because of the lowest pressure setting.  But not easy enough if I am still not able to fall asleep within 3 hours.  
Another thing I am trying to both visualize and get used to is the pressure support to keep my airway open at all times (obstructive apnea).  A great term I read the other day was, "air splint".   To be an effective "air splint" for my upper airway, I now realize I am going to have to have at least some incoming pressure constantly to keep my airway from collapsing (when I am both inahling and exhaling).  I never realized that before.  The pressure can't ever get down to zero with the incoming air, or my airway will collapse. Am I right or wrong?   This constant pressure has been a little tough for me to get used to also, but now that I understand why it is necessary and visualize how it is working, it should make it easier for me to tolerate.  
But then just after writing that I realized this:  if the 1st part of the blasts that startles me and goes into my stomach keeps happening, then the "air splint" pressure may be too low (my airway has to be totally obstructed for some of it to go into my stomach.  Right?)  Or is it that the pressure is way way way too high and it causes the aerophagia even with my airway "splinted open"?.   Which is correct?