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Permalink Reply by RockRpsgt on August 10, 2009 at 9:29am

Hi Bill welcome to sleep guide.

Untreated OSA can lead to CHF or a central nervous disorder that would cause CSA. I believe the proper term for your sleep related breathing disorder is Complex Apnea. The ASV unit is a special machine that will treat Obstructive Apneas and Central Apneas as well as hypopneas, snoring, and flow limitation specifically.

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Permalink Reply by Bill Shoemaker on August 10, 2009 at 10:34am

Hi Rock,

Yes, I think the complete diagnosis for me Complex Severe Sleep Apnea. I was wondering what causes what - if one is cleared up, what happens to the other, that kind of thing.

I'm just starting to get into some of this and can't ask elsewhere.

Thanks for your help,
Bill

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Permalink Reply by RockRpsgt on August 10, 2009 at 10:42am

Nice post jnk.

that's another chicken and egg question Bill. I would say for the most part that untreated OSA can and will lead to the underlying causes of CSA. It is probably rare but I suppose it could go the other way under the right circumstances.

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Permalink Reply by Bill Shoemaker on August 10, 2009 at 10:46am

Thanks jnk,

That's just the kind of thing I was looking for. Boy, is this going to take a lot of research to get even a little understanding!

Thanks again,
Bill

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Permalink Reply by RockRpsgt on August 10, 2009 at 11:47am

Bilevel yes. It is very rare that complex apne is treated by CPAP. For some people the flex/epr technology can be the stimulus needed to tackle CSA. it is very rare though. In most cases CSA won't even show until the obstructions have been cleared up by CPAP.

you make very good points jnk.

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Permalink Reply by Bill Shoemaker on August 10, 2009 at 12:02pm

I was on a straight CPAP for a week - by mistake. It got my 34.7 AHI down to 30. Obviously, CPAP alone wasn't going to get the job done. I'm getting the ventilator today as a result of the lack of success on straight CPAP.

I will keep searching, and looking for the most up-to-date stuff.

Thanks again,
Bill

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Permalink Reply by RL on February 18, 2010 at 2:30pm

Hi Bill,
I am currently exploring similar issues to your original post due to my diagnosis (CompSA). I am currently using my original CPAP (7 + weeks) with steady pressure of 7 and 02 @3. Can you comment on your current xPAP therapy since last summer? I am curious how your ASV PAP has been working for you, and have you had any evaluations of your nightly data as recorded by the PAP and analyzed by your doctor &/or RT? Are your central apneas reduced or eliminated with the ASV? Are you also dealing with underlying conditions like COPD or CHF, hypertension, etc.?

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Permalink Reply by Bill Shoemaker on February 18, 2010 at 8:15pm

Hi RL,

My BiPAP autoSV seems to be the right machine for me. My apneas have been almost completely eliminated. I can't guess how this happened. My Dr. ordered the machine with only an "at home" sleep study. He did not have me titrated, as Respironics requires, he set me up with these settings: Max IPAP- 20, Min IPAP- 5, EPAP- 5, Backup rate- Auto. Neither he nor any RT ever asked about my data. As one person on CPAPTALK.com said, I was a "set it and forget it patient."

While the SV machine pretty well eliminated the apneas, Periodic Breathing and hypopneas dominated my results. Sometimes I had AHIs of 18 - 19 - all hypopneas.

I requested a pulse oximeter and got a loaner for one night. When I turned it in they read the data and three weeks later I got a call asking me to meet the Dr - for the first time. This was December 09 and I was diagnosed in July 09 and I had never seen the Dr. He wanted to put me on oxygen at night since I was desaturating badly. I argued that I wanted a full sleep study and the titration I had never had.

He told me I was obsessed with numbers and his clinical judgement was all that counted. (He does not think that patients should know their own data for fear that they would "obsess upon a number.")

I prevailed, and have just completed my sleep study and titration.

My BiPAP autoSV has been set as follows: Max IPAP- 14, Min IPAP- 6, EPAP- 6, Backup rate- Auto. It is much more comfortable with the lower pressure, and it looks like my hypopneas are down, at least for the moment.

My AHI is 85, with centrals double the obstructive apneas. My nadir desaturation was 71%, so the oxygen at night was a good call. I can't think of anything else good to say about my Dr. The RTs in the department are good people, but can't overcome having such a person in charge. I am pretty much the only one interested in my data, so I get a lot of help on the forums.

Advocate for yourself. Get a support network, even if they are all online. This is a complicated disorder - I have not encountered anyone else with my precise problems - and some I correspond with have some very exotic issues, but we are all on one of the SV machines.

Keep asking questions. Don't use my Dr.

Best regards,
Bill

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Permalink Reply by RockRpsgt on February 18, 2010 at 9:01pm

ASV? No titration!

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Permalink Reply by Bill Shoemaker on February 18, 2010 at 9:07pm

Hi Rock,
You betcha! Superb clinical judgement requires neither data, nor titration - who cares what Respironics says in its FAQ.

I've told my primary care Dr. that I'm not seeing this sleep Dr. again. Your comments are very restrained!

Rock Hinkle said:

ASV? No titration!

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Permalink Reply by RL on February 19, 2010 at 12:17am

Thanks for the update Bill. I agree, this CompSA is rather complicated. Sometimes I think it is just my continued fog brain status, but in my periods of clarity, I review everything and get more convinced I will need the ASV. Just heard from pulmonologist's office today. They are sending a new Rx over to my DME to try some type of Auto unit that will give actual efficacy data, unlike the basic CPAP I've been on for 2 months. Then I can find out if I am still having the central apneas ( I believe I am) which may bump me up to ASV. This bureaucratic process means I will have to wait until sometime next week (?) to get the new unit. I would be happy to not need the ASV, but we'll see. So I guess I am happy things are progressing, but feeling a bit impatient. If this new unit does not clear up the central apneas, then I will have to go for a 3rd PSG/titration night. I read an article today that indicated that in some cases, use of a standard CPAP could actually make the central apnea worse. (I believe that was via jnk's link earlier in this thread). Thus, I'm a bit anxious to get off the CPAP and on to what may work better. In the back of my mind is the thought that maybe I am just too anxious, and really, my sleep debt is the problem, which will just take more time.

At this point, my RT/DME will have to do the card reading, provide me & pulmo with data. Pulmo office does not have software or do readings themselves. I will wait until sure what unit is definite before exploring getting my own, but not sure if it will work with my Apple computer. My pulmo said something similar to me - that how I felt was more important than the numbers; but he does want the numbers too. I think it is good to work with both. It seems a fine line to walk with communicating with all members of my medical team. They are responsive, but it seems there is a little resistance to my pushing. I believe the complexity of the condition and my proactive approach to my therapy is not what they are used to.

I am somewhat concerned as to how I will respond to the auto adjusting unit, since my previous PSGs indicated that no other pressure level worked for me than 7, causing central apneas to be worse with both higher and lower numbers. Unless that was unique to the specific PSG, it might mean some rough nights and days ahead to get this sorted out.

"And so...to be continued next week"

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