I ask for everyone's (including Muffy) help.....

[allen476]

Well I am entering phase 2 with the new cardiologist. I had the re-titration study done and it wasn't what he expected. He would like me to go to the Sleep Dr. (now referred to as Dr. Moron) to see what he says. I, on the other hand, would rather handle this through my PCP but she is not very keen on sleep disorders. So I call on everyone here for help.

The sleep study can be seen at http://photobucket.com/cpapreport

The first thought is that would I be correct in asking for a Bi-PAP at this pressure?

The rest, while not foreign to me, is beyond my comprehension. So I ask for guidance on this. My PCP will help but I have to be able to explain to her what I want. She will prescribe a new machine if necessary, but she has to be able to show in her notes the justification for it.

Otherwise I really need to find a good sleep Dr. in upstate NY.....

Allen

P.S. For the rest following the saga....... Cardiologist's office scheduled my myectomy for July 30. Also have made progress on getting my back and neck repaired. I have an appointment with an another neurosurgeon. Insurance company has finally agreed to settle on this and will abide by his recommendation. So I finally will get an answer to all of that on July 20th.

[who]

They let you tape?!!!!! Don't sleep on your back. Get a BiPAP. Meds?

[OCSleeper]

Breathing at that pressure is like trying to drink from a fire hose.

One prime justification would be the high pressure (>15 cm). I think the standard protocol is to try a bi-level machine during the titration if the pressure reaches that point, but many labs don't follow the standards. Another major justification would be your inability to tolerate your titrated pressure at 18cm. (Sleep docs seem to assume that if you can sleep 5 mins in a lab at 18 cm, then it would not be problem at home. Wrong!)

Generally, you have to 'fail' cpap in order to get a shot a bi-pap. And if they think you need one, then a separate bi-pap titration might be ordered for you as well.

I went through this whole process with Kaiser: Titrated CPAP pressure was 19cm. At home with an APAP, the 90% pressure was 17. Bi-pap titration lead to a fixed pressure setting of 15/10. My current 90% pressure is 16/13.

You'll eventually need a bi-pap, but hopefully your pressure (at least the EPAP) will be less.

[allen476]

They let you tape?!!!!! Don't sleep on your back. Get a BiPAP. Meds?

Yes they did let me tape......didn't even raise an eyebrow with them. Not sleeping on my back is a bit more challenging. Due to my neck (5 herniated discs, 1 ruptured disc) and my back (3 herniated discs and 1 ruptured disc) I can't sleep on my side for very long. I was surprised I slept on my side as long as I did as my neck usually let's me know that it doesn't like it.

Med's - Blood pressure, primidone, and percocet.

Allen

[allen476]

Breathing at that pressure is like trying to drink from a fire hose.

One prime justification would be the high pressure (>15 cm). I think the standard protocol is to try a bi-level machine during the titration if the pressure reaches that point, but many labs don't follow the standards. Another major justification would be your inability to tolerate your titrated pressure at 18cm. (Sleep docs seem to assume that if you can sleep 5 mins in a lab at 18 cm, then it would not be problem at home. Wrong!)

Generally, you have to 'fail' cpap in order to get a shot a bi-pap. And if they think you need one, then a separate bi-pap titration might be ordered for you as well.

I went through this whole process with Kaiser: Titrated CPAP pressure was 19cm. At home with an APAP, the 90% pressure was 17. Bi-pap titration lead to a fixed pressure setting of 15/10. My current 90% pressure is 16/13.

You'll eventually need a bi-pap, but hopefully your pressure (at least the EPAP) will be less.

They didn't try a bi-pap during the night. It was on the order to try, but it was never followed. I have been using an auto at home and I have been having difficulty exhaling at night. Some nights it wakes me up and I have to take my mask off for a minute to catch my breath.

Allen

[Roman Hokie]

Allen, are you talking the REAL upstate NY or that little area of suburbs that is still south of the PA border?

I'm in Central NY and think my pulmo is the real deal. His nurse has been helpful, as has his office manager. I've only been to the two studies and on the hose for just over 2 weeks. I'm waiting for the "bang" of the benefit of it, but I'm gradually improving my mental and focus skills.

I'm in Oneida County if you want me to make some recommendations. PM me.

As for your PCP not being familiar with sleep disorders, I think that's an ethical thing. If your PCP isn't familiar with something, he or she has no right to be trying to treat it. Referrals, consultations, and even self-education may be in order for your PCP. She would be right to "punt" to someone with more experience in this area.

[who]

primidone, and percocet.

Serious combo there. I might want AVAPS or BiPAP w/backup rate.

[allen476]

Allen, are you talking the REAL upstate NY or that little area of suburbs that is still south of the PA border?

No the real Upstate......About 1/2 way between NYC and Buffalo along the PA border

As for your PCP not being familiar with sleep disorders, I think that's an ethical thing. If your PCP isn't familiar with something, he or she has no right to be trying to treat it. Referrals, consultations, and even self-education may be in order for your PCP. She would be right to "punt" to someone with more experience in this area.

She is familiar with it but now getting into an area that she isn't as knowledgeable. As far as treatment goes, she is a firm believer that all CPAP patients should have all of the therapy data to look at. She also commended me as to looking at it. The only issue is if it is really worth the effort to pursue a bi-pap at this time or wait it out until it is more medically necessary. She knows that at pressures above 15 really should be a bi-pap. However she is not sure if there is enough in the data to support it. Hence why I am turning to here. I really don't like the thought of driving 4+ hours to a sleep doc and the only one in this area is about as helpful as a bag of wet leaves.

I would like it if she was handling it. She has been fine with my CPAP and was very supportive when I switched to auto. She would rather that I get a bi-pap auto but the question is, is there enough in the data besides the pressure to justify it?

Allen

[allen476]

primidone, and percocet.

Serious combo there. I might want AVAPS or BiPAP w/backup rate.

Hopefully I will be off the percocet in a few weeks. I have to take it at night or the pain from my neck will wake me up after 2 hours.

Primidone..... I will be on that for the rest of my life.

Sad part is, neither make me tired, just more comfortable....

Allen

[who]

Most doctors recommend that primidone should never be combined with alcohol, narcotics, tranquilizers, or antihistamine.

http://www.med.nyu.edu/cec/treatment/me ... primi.html

(percocet contains oxycodone)

Some drs would be especially cautious in allowing that combo with a patient who had high pressure needs for the prevention of apnea.

[Roman Hokie]

No the real Upstate......About 1/2 way between NYC and Buffalo along the PA border

Oh, you mean the SOUTHERN TIER. LOL!

I bet you could get to my pulmo in less than 2 hours. If you're interested, PM me.

She is familiar with it but now getting into an area that she isn't as knowledgeable. As far as treatment goes, she is a firm believer that all CPAP patients should have all of the therapy data to look at. She also commended me as to looking at it. The only issue is if it is really worth the effort to pursue a bi-pap at this time or wait it out until it is more medically necessary. She knows that at pressures above 15 really should be a bi-pap. However she is not sure if there is enough in the data to support it. Hence why I am turning to here. I really don't like the thought of driving 4+ hours to a sleep doc and the only one in this area is about as helpful as a bag of wet leaves.

I would like it if she was handling it. She has been fine with my CPAP and was very supportive when I switched to auto. She would rather that I get a bi-pap auto but the question is, is there enough in the data besides the pressure to justify it?

Allen

I figure you're somewhere along the NY-17 / I-86 route. I know that well.

As for the pressures and stuff like that, there are other (more knowledgeable than I) people here. And yes, Muffy's one of them from what I'm told. Seriously, let me know if you want some information about the pulmo/sleep specialist up here. He's one of the leaders in the area and a strong supporter of the new Sleep Diagnostic Center up here. The place is like a hotel but without wifi.

[-SWS]

I looked at your PSG. It documents basic obstructive apnea... But the PSG does not document any of these justifiable conditions warranting BiLevel: 1) restrictive thoracic disorders, 2) COPD, 3) central/complex sleep apnea, and 4) hypoventilation.

In your case of ordinary obstructive apnea, BiLevel is justified by meeting all CPAP criteria in addition to this criterion:

D. A single-level (E0601) CPAP device has been tried and proven ineffective based on a therapeutic trial conducted in either a facility or a home setting.

http://www.resmed.com/us/documents/1013 ... ilevel.pdf

I have been using an auto at home and I have been having difficulty exhaling at night. Some nights it wakes me up and I have to take my mask off for a minute to catch my breath.

That seems to meet criterion D above. Good luck!

[sleepmba]

IMHO It looks like you had a hard time sleeping. It looks like you were over-titrated. You really didn't have many hypops or apneas to warrant the increases you got. I'd suggest a retitration and I'd hate to say...maybe with a different tech. Some tech's (inexperienced) will increase pressure just because you are arousing. That's what it kind of looks like. Even if you were snoring a lot....we are only supposed to increase about 2 or 3 times (1 cm/h2o each) for snoring as long as everything else is clean, ie no apneas or hypopneas.

Let us know how it goes!

[allen476]

IMHO It looks like you had a hard time sleeping. It looks like you were over-titrated. You really didn't have many hypops or apneas to warrant the increases you got. I'd suggest a retitration and I'd hate to say...maybe with a different tech. Some tech's (inexperienced) will increase pressure just because you are arousing. That's what it kind of looks like. Even if you were snoring a lot....we are only supposed to increase about 2 or 3 times (1 cm/h2o each) for snoring as long as everything else is clean, ie no apneas or hypopneas.

Let us know how it goes!

In my own opinion, I didn't feel that I slept as well as I do at home, in fact I was sick the next day. The pressure that they derived is about what my data shows though.

The tech was an older woman and she was nice but didn't understand that the starting pressure of 13 made me felt like I was suffocating. After an hour, she finally put it to 15. But as far as the rest of the night, I had the same problem as I do at home, the pressure gets too high and wakes me and I have to take the mask off for a minute to catch my breath. So maybe I should ask if this is normal for someone that has been on CPAP at higher pressures for 4 years?

Allen

[allen476]

I looked at your PSG. It documents basic obstructive apnea... But the PSG does not document any of these justifiable conditions warranting BiLevel: 1) restrictive thoracic disorders, 2) COPD, 3) central/complex sleep apnea, and 4) hypoventilation.

In your case of ordinary obstructive apnea, BiLevel is justified by meeting all CPAP criteria in addition to this criterion:

D. A single-level (E0601) CPAP device has been tried and proven ineffective based on a therapeutic trial conducted in either a facility or a home setting.

http://www.resmed.com/us/documents/1013 ... ilevel.pdf

I have been using an auto at home and I have been having difficulty exhaling at night. Some nights it wakes me up and I have to take my mask off for a minute to catch my breath.

That seems to meet criterion D above. Good luck!

Thanks for the info. Maybe I am not far off then.

Allen