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New BiPAP ST user Vet with complex apnea
RE: New BiPAP ST user Vet with complex apnea
   


Wore my collar again for about three hours last night at the outset. Was more comfortable with it than the first time. Not sure any difference showed up on OSCAR. 

VA sending me an Resmed Airfit F30 hybrid mask to try out.
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RE: New BiPAP ST user Vet with complex apnea
I don't see much difference in the results with the collar. The VA sure is determined to not find ASV as a solution. Whatever your problem, it's not leaks.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New BiPAP ST user Vet with complex apnea
Well that's nice of them, but it's not going to make your machine turn into an ASV.

Respectfully, I suggest going to Complaint 101 school, grasshopper. They will notice complaints far easier than they will ever see numbers that point to an ASV as a need. Complain until their ears bleed.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New BiPAP ST user Vet with complex apnea
   
   
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Here are my last three nights.  There are breaks where I dealt with a coughing fit occasionally.  

My AHI's have been going back up the last couple of days.  

My RERA's seem to remain elevated.  

I have broached the subject of an ASV machine with the VA and mentioned my RERA's to them.  I'm sure they'll balk at first but at least the subject's out there.


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RE: New BiPAP ST user Vet with complex apnea
I'll point out the Muziccity had his ASV titration and is solidly on his way. When you joined, there were three new members that needed ASV, and you're my last problem child. Obviously there is very little we can do with CPAP to resolve what is going on here as long as your doctors are on a cruise on da Nile. Nothing here resembles the kind of efficacy that would allow you to get a good night of sleep. ASV remains your best solution and will simply eliminate all of this mess. With the current health crisis, I think it is going to be even more difficult for you to get their attention. Keep trying.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New BiPAP ST user Vet with complex apnea
(03-25-2020, 08:21 AM)Sleeprider Wrote: I'll point out the Muziccity had his ASV titration and is solidly on his way.  When you joined, there were three new members that needed ASV, and you're my last problem child.  Obviously there is very little we can do with CPAP to resolve what is going on here as long as your doctors are on a cruise on da Nile. Nothing here resembles the kind of efficacy that would allow you to get a good night of sleep. ASV remains your best solution and will simply eliminate all of this mess.  With the current health crisis, I think it is going to be even more difficult for you to get their attention.  Keep trying.

They told me as much when they replied to my last email mentioned above.  I figured that.  But, they didn't immediately dismiss my mentioning of ASV. The nurse said she would speak to my "whatever he is" about what I told her.
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RE: New BiPAP ST user Vet with complex apnea
Please consider involving your VA patient advocate. https://www.va.gov/health/patientadvocate/
You have waited long enough and gotten nothing but a run-around.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New BiPAP ST user Vet with complex apnea
Just as an update, 

Background:
My home sleep study diagnosed me with central/obstructive apnea.

My overnight study confirmed this with the addition of Periodic Limb Movement. 

There was a little questionnaire when I first went to the VA to get my home sleep test kit. It asked questions such as do I fall asleep in passenger seat on long trips, do I take naps, do I fall asleep watching movies, etc..

My score was a low 6.  I didn't have too many complaints along those lines. But I did tell them I had difficulty sleeping and that my daughter had observed me stop breathing once at night.

Fast forward to today, (with my complete thread here as background.)

I have gone from bipap 9/15 to 10/16 to CPAP 10 settings.

I broached the subject of my AHI fluctuating back up and RERA's and the subject of an ASV machine with my nurse and clinician. I've been telling them all along that I don't feel any improvement in energy daily.

Their position seems to be this...(my interpretation)

Because my initial questionnaire presented such a low score, than they don't expect me to see a significant improvement, with only a slight improvement over an extended time. (Months)

With regards to my total AHI's fluctuating back upward, they don't think it's uncommon and are comfortable with my being >10. 

With regards to my RERA's being around the 12/13range,  it appears they believe my machine is misinterpreting the data because it doesn't know when I'm awake or asleep. 

With regards to the ASV they still don't think I'm a candidate for one. 

They're satisfied with me at CPAP 10. 

I just responded to them and asked them what the benefit of CPAP is if I'm not going to see any improvement in the quality of my sleep/energy. 

They may not be too appreciative of the way I asked the question,  but I'm already working on a contact with my patient advocate.  

I can see no benefit wearing an uncomfortable mask every night for the rest of my life if there is no demonstrable benefit?  

I am a little uncomfortable with this patient advocate route (questioning my treatment) but don't see any other way to get beyond where I am.
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RE: New BiPAP ST user Vet with complex apnea
I don't see how using the patient advocate has a downside risk to the current situation where your poor therapy efficacy is acceptable to your medical team at the VA. Any scientist or doctor should be accustomed to peer review and a second or third opinion. The apathy concerning whether you have good therapy and are treated well, clearly requires oversight. You have done your part and are actively seeking solutions. As I have discussed, your goal should be a titration sleep test that evaluates ASV. You have not had an acceptable titration result with CPAP or BiPAP, and you doctors seem fine with that. The fault is not with you.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New BiPAP ST user Vet with complex apnea
It's funny that the medical staff seems satisfied with poor medical treatment that you are receiving. However, it is you not them being treated. I cannot stress it enough, tell them pointedly this therapy is not effective. You are not benefiting from this. I understand tests need to support going to ASV, so a sleep study involving an ASV is needed. If the ones you're dealing with are not interested in listening to you, this means they are not interested in treating you properly. Get their superiors involved. They are not listening to your complaints, assuming you are voicing these in strong but polite fashion. If you are not voicing complaints, you will not progress. IMO you must take complaints to the next, stronger level, and moving to a new group of docs via superiors, or you will be stuck in this quicksand of not going forward.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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