HELP!! I'm about to stop therapy

[brazospearl]

glcksc,
Two things seem to be true here. I.) You need effective CPAP therapy. 2.) Your current therapy isn't working effectively. Please don't give up, and please get yourself to an understanding doctor ASAP. One of our more experienced hoseheads (probably Rooster, but I could be wrong) says that when therapy isn't working you've got the wrong machine, wrong pressure, or wrong mask. I'm curious why your titration was with a BiPap but you were prescribed a CPAP; that just seems incongruous to me. And, contrary to what your DME said, all APAP machines are also CPAP machines, so you should be provided one if you ask for it. You've been had by your DME, and your doctors should assist you in correcting this. Am I correct in thinking you're a military veteran? If so, there are many advocates in your corner; contact your local veteran's organizations and your elected officials--everybody wants our vets to be well-taken care of, and it's bad publicity if you don't get the treatment you need. Don't give up, and let us know if we can help.

[SleepyT]

someone will correct me if i'm wrong about this...but with your pressure set at 12 and an EPR at 3....i believe your real pressure is 9. see if you can at least set your EPR to 1....so you can get closer to your prescribed pressure of 12....

[Mtnviewer]

I read through this thread but did not see that you answered Wulfman's question, which he asked twice .... which is: "What is your sleeping position during apneas?"

I'd suggest that you address this question ASAP and see if your events recorded in your software occur when you are sleeping on your back, or if you are sleeping on your side, if your head is turned toward it's back (no longer sideways as the head and body rotate independantly).

I'd also suggest that you video record your sleep for several nights or more and study the videos to see if there is something that you are doing or that is going on to cause your events? Just looking at the data is just guessing at the cause of the events. All the data tells is that there are events but it does not tell us why or what is causing the events or your closed airway.

My suggestions are: STAY 100% OFF YOUR BACK (body AND head) and to video record several or more nights of sleep for you to figure out what might be going on during your events. Otherwise we're just guessing at solutions.

[glcksc]

I want to thank everyone for their suggestions. Last night I used the cpap with mask from 10pm until 5am and did not take an Ambien. My S9 computed AHI for all of last night was much better with an average AHI of 18.1. Not great yet but much better. My hourly AHI ranged between 4 in one hour (best for a single hr) to 38 (worst for a single hr) in another hour. My graph does not look much better as I still have LOTs of apneas.

This graph is for my entire night from 10 pm until 5 am using CPAP and mask. I did not take an Ambien. My EPR was supposed to be set to OFF but I think it was actually still on but reduced to maybe 1 or 2. I slept partly on my back and partly on my left side. Still looks rather bad, but the overall AHI of 18.1 is better than before.

This is a graph of a 10 minute period around 4am. The previous hour (3 to 4 am) recorded only 4 apneas. The next hour (4am to 5am) recorded 38 apneas. No idea why the increase in apneas.

[glcksc]

Now to answer a few questions. Sorry for delay in responding. We had grandkids over for weekend and I’m in a lull right now.

Wulfman - I usually will try to get to sleep on back because I have had so much trouble with mask leaks, although last night my mask did real good while sleeping my side – so from now on I will sleep on my side as long as my mask will cooperate.

SleepyT – If I understand EPR for my S9, the EPR is only active during exhale periods, so I believe my pressure is 12 cm during inhale cycle and drops to 9 cm during exhale cycles. I could be totally wrong about that. I did set my EPR to OFF last night but it either did not actually get changed or something because I was positive the pressure was changing between inhale and exhale cycles.

Mtnviewer – I like your suggestion about videotaping my sleep. I had not thought of that, but will need to give it a shot. Thanks.

CollegeGirl – Even during my sleep study I was wondering if my anxiety was the main cause of my restlessness and if that would in fact cause inaccuracy in my results so I question the accuracy of my sleep study. I took an Ambien just prior to the actual start of my sleep study in a effort to relax but it may have only made things worse. I did notice my sleep study report indicated they varied my pressure from 6 cm to 13 cm and back to 12 cm for best sleep disordered breathing and quality of sleep with no snoring.

Brazospearl – Yes, I am retired military with 22 ½ yrs in USAF. I am going to see if I can get my S9 Elite changed to an S9 Auto. Not sure how to get that done, but would like inputs about how to make the change. I’m not sure it can be done since I was silly enough to accept the S9 Elite and not try to get the S9 Auto. My Sleep Study report contained the following line that I believe indicates they tested me on both CPAP and BiPAP. Evidently I did better on the CPAP. Not exactly sure what it says though.
1. SLEEP APNEA OBSTRUCTIVE
Procedures – Poly W/ Four or More Addit Sleep Param Init CPAP /Bilev Vent X 1

Julie – My wife even more recently than I had a sleep study and was prescribed Bipap. She has a Resperonics M-series w/C-flex. Her pressure is 6 to 12. She has a nasal pillow mask and seems to be doing great with very little problems. We decided to have me try her machine/mask the other night. I can’t tolerate the nasal mask so I used my mask. Actually the pressure seemed just like my S9. So for that reason I’m not sure about getting a different machine other than maybe the S9 Auto. I like the data capability of the S9 and I already have the software to view it.

TheTwinsMom – Thanks for your input. I had thought that the Ambien might actually make my apneas worse. I don’t think I will take any more of them. I also read that taking any kind of sleep aid can be bad for someone with sleep disorder breathing. The stronger the sleep aid the worse it can be. Something about it being much more difficult for your body to restart breathing in fact you might not be able to re-start breathing and die.

[DoriC]

I'm not sure if this was mentioned on the first page but having the right bed pillow is a must. My husband uses a SleePapPillow with the sides cut out for his FF mask or there's a Regeneris Buckwheat Pillow which can be shaped whichever way you like or the Chiroflow(Den uses that one). Did your study mention anything about positional apneas? Most of my husband's events happened while on his back during the study so he never sleeps that way now. I had to nudge him off his back at first but he's trained now. Judging by your reports I think you'd be a candidate for an auto, so give it your best shot. You deserve the best. Good luck and keep us posted.

[SleepingUgly]

In your sleep study, was your apnea worse during REM? It often is, but was yours markedly worse?

Does the S9 Elite not work in Auto mode? That is a real problem, I think, as you might be someone who would do better with a range of pressures. It's possible that you will do well just bumping up your pressure. I don't have enough experience to know if there is such a thing as more apneas at a higher pressure than a lower one (I think some people have reported it), but intuitively, it seems if you're still having THAT many apneas, you should bump up your pressure.

EPR is usually recommended IF you need it for exhalation relief. Turn it as low as you can at this point would be my advice.

As far as the Ambien, it is supposed to be safe in sleep disordered breathing. If you can sleep without it, why take it. But if you don't sleep well without it, I wouldn't hesitate to take it based on the information I have, but you have to make your own decision. It is not an old generation sedative hypnotic, which would not be advisable.

[sagesteve]

No STOP! Give up. Your post was so long it bores me. Just give up...NOT!!!!!! Do you get it? BooWho.

[Thomas F.]

SleepyT – If I understand EPR for my S9, the EPR is only active during exhale periods, so I believe my pressure is 12 cm during inhale cycle and drops to 9 cm during exhale cycles. I could be totally wrong about that. I did set my EPR to OFF last night but it either did not actually get changed or something because I was positive the pressure was changing between inhale and exhale cycles.

You are correct that EPR of 3 drops you to 9 cm on exhale. THIS IS MOST LIKELY THE PROBLEM. Apneas occur on the exhale, not the inhale. As mentioned before, you need to switch EPR off or no more than 1 and see what the results are. Also as mentioned before, eliminate sleeping on your back as one of the variables. Wear a back pack or make a wall of pillows that prevent you from rolling over. If your results look better then you can begin to raise your pressure, little by little, always checking the data next day to see if results are improving.

I have a bipap. This is how I learned to raise pressure on the exhale to reduce or eliminate obstructive apneas. To go after hypopnias you increase pressure on the inhale.

[SleepyT]

SleepyT – If I understand EPR for my S9, the EPR is only active during exhale periods, so I believe my pressure is 12 cm during inhale cycle and drops to 9 cm during exhale cycles. I could be totally wrong about that. I did set my EPR to OFF last night but it either did not actually get changed or something because I was positive the pressure was changing between inhale and exhale cycles.

You are correct that EPR of 3 drops you to 9 cm on exhale. THIS IS MOST LIKELY THE PROBLEM. Apneas occur on the exhale, not the inhale. As mentioned before, you need to switch EPR off or no more than 1 and see what the results are. Also as mentioned before, eliminate sleeping on your back as one of the variables. Wear a back pack or make a wall of pillows that prevent you from rolling over. If your results look better then you can begin to raise your pressure, little by little, always checking the data next day to see if results are improving.

I have a bipap. This is how I learned to raise pressure on the exhale to reduce or eliminate obstructive apneas. To go after hypopnias you increase pressure on the inhale.

God! I love to be right!