setback on my sleep apnea, requet for help

I would like some help from the sleep apnea community after a recent setback with my apnea.

Background
I was diagnosed with sleep apnea over 20 years ago. Have been using a cpap/bipap machine for as long as they have been around. I have had multiple sleep studies. I had uppp about 10 years ago, made me significantly worse (I calculate I required 40% more pressure after the surgery then before). The past 8 years I have been doing relatively well using a PR m series auto bipap 700m, requiring a nap at noon to get through the day, with some headaches that had improved the past couple years. About 2 years ago, I decided to try a PR system one auto bipap, 760p. I used the machine only briefly, because it did not help me as did the 700m, and left me with severe headaches (on the auto setting). I kept it without using it after going back to using the 700m (should have tried to return it to the DME immediately, now out of warranty). I had planned to experiment with different settings with the 760p, but never got around to it. I have relied on auto settings for the past 10 years; the non auto settings, based on my sleep studies setting it at 90% of the IHAP, never worked for me, left me more tired with headaches.

The machines
A month ago, my 700m malfunctioned, as far as I could tell. The data management software showed that it appeared to hover at the highest IHAP limit. I assume the sensor broke when it came in contact with some water. These machines are obsolete, so cannot be repaired. I started using my out of warranty 760p again, but as before, does not help much. I figured out how to use the data management software on the 760p, and it shows that the air pressure it delivers is significantly less than the 700m. I am wondering if it was malfunctioning when I first got the machine as well as now.

The DME
About two weeks ago (after seeing my doctor), I met with a RT at my DME provider. He reviewed my data, but was not clear about a treatment plan, vaguely referred to a couple options that he said he would get back to me on. I am not sure if his being vague was his lack of acumen, or intentional effort to avoid delivering a service that did not make them a sufficient amount of money. After some unreturned phone calls, I composed a non threatening letter detailing my problem and requests (not demands) for treatment, and sent it to the owner of the DME and a copy to my physician. (I will describe my requests below).

The Doctors
My current doctor is a pulmonologist. I requested a new sleep study last Friday, told she was out of the office, and would not review my request until her return mid this week. However, today (a holiday) I got a call from the doctor’s office stating “The doctor does not think you need a new sleep study, and is not a sleep specialist, is only a pulmonologist. Our sleep specialist is not available to see you, is overbooked, we would like to refer you to Dr. ….. (in another office unrelated to ours).” I asked if they received my letter (copy of the one I sent to the DME) and they said, no, the doctor is not in the office till mid this week. If the doctor was not in to receive the letter, how could she have seen the request for the sleep study? I think that perhaps the office manager saw the letter, and someone in the office decided I was a potential threat, and does not want to continue to provide me with services, i.e., my physician’s office decided to use deception to avoid treating a complicated case, because I sent a letter they were scared.

My requests (made in the letter)
1. To rent from you a system one auto bipap machine, 760p model, that we believe is functioning correctly, to compare to my current 760p, to review how it helps with my sleep, as well review the data software that I have at home to determine the pressures it delivers during the night. If my 760p is found to be broken, I am told by Respironics that I would need your respiratory therapist to send the machine to be fixed out of warranty (that I would pay for). If you don’t have a working 760p to rent to me, then we should immediately send my 760p to respironics for an evaluation. [The DME called me today, agreed to this request]
2. To rent from you an m series (700m) auto bipap, if you have one, that you think is working properly, to see if that was delivering an algorithm that was more effective in treating my sleep apnea, and compare the results in my sleep and the data management software that indicates it is working similarly to the way my broken 700m was when it was working.
3. To rent from you some current model auto bipap machines that you have available to see if we can find a machine that delivers an algorithm that improves my sleep to prior levels.

My Questions (for the forum)
1. Is my asking for a current sleep study unwarranted, given that I had one last done two years ago? I am wondering if the machines are not actually malfunctioning, but there has been a change in my sleep pattern.
2. What kind of sleep specialist should I be seeing? I thought the pulmonologist was a sleep specialist, but apparently not.
3. Is it realistic (given the costs to the DME) for me to make the request in #3 (to find a machine that works).
4. Other thoughts?

I would not assume you have a problem with your machine.
What are the Specific pressure settings your using in Auto? If your just using the wide open default setting of 4-20 that is likely why it is not working for you.
You need to Download sleepyhead software so that you can view graphs of your actual treatment.
Graphs can then be posted here for interpretation by Forum members.
after reviewing the data pressures can be adjusted to improve your treatment.
viewtopic/t88983/Pugsys-PointersSleepyH ... ml#p816549

thanks for the reply!
On the 760p, I tried several different ipap upper limit settings.

Here is a recent graph

I have the two auto bipap machines, the 700m and the 760p.

What makes you think your machine or settings are not working. Those numbers are about as near to perfect as you can get.

drzman49 wrote:thanks for the reply!
On the 760p, I tried several different ipap upper limit settings.

Here is a recent graph

what do you imagine is the problem that needs fixing?

What makes you think your machine or settings are not working. Those numbers are about as near to perfect as you can get.

When I started using the 760p about a month ago, I experienced being more tired by 40%, and about 40% compromised in cognitive functions, e.g., concentration, plus headaches every day.

what do you imagine is the problem that needs fixing

That I do not know. For now, would like some help with my questions from original post, which are

My Questions (for the forum)
1. Is my asking for a current sleep study unwarranted, given that I had one last done two years ago? I am wondering if the machines are not actually malfunctioning, but there has been a change in my sleep pattern.
2. What kind of sleep specialist should I be seeing? I thought the pulmonologist was a sleep specialist, but apparently not.
3. Is it realistic (given the costs to the DME) for me to make the request in #3 (to find a machine that works).
4. Other thoughts?

so far, have gotten some help with #4.

Before they prescribed the Bi-pap they should have done a full sleep study with titration to zero in on the actual inhale and exhale pressures you needed for treatment.
did that not happen?
If not then that is a solid reason to get a new full sleep study performed.

jtravel wrote: titration to zero in on the actual inhale and exhale pressures you needed for treatment.

HAH!

drzman49 wrote:

what do you imagine is the problem that needs fixing

That I do not know. For now, would like some help with my questions from original post, which are

My Questions (for the forum)
1. Is my asking for a current sleep study unwarranted, given that I had one last done two years ago? I am wondering if the machines are not actually malfunctioning, but there has been a change in my sleep pattern.

sleep changes from hour to hour and night to night. you've got an auto machine, and it's treating you adequately. most people try to avoid the 'fun' of sleep studies if they can do so.

drzman49 wrote:2. What kind of sleep specialist should I be seeing? I thought the pulmonologist was a sleep specialist, but apparently not.

again, what problem do you think needs fixing, or do you just want to spend money on doctor visits?

drzman49 wrote:3. Is it realistic (given the costs to the DME) for me to make the request in #3 (to find a machine that works).

no, it's easy to test a machine to see if the pressures are right.

drzman49 wrote:4. Other thoughts?

you seem to be searching for a problem to solve.

Are your settings with this machine the same as the old machine?

Were you using a straight pressure or auto on the older machine? It is possible that the changes in pressure up and down are disturbing your sleep. Some people are very sensitive to pressure changes, while others can sleep through wild pressure changes.

jtravel wrote:Before they prescribed the Bi-pap they should have done a full sleep study with titration to zero in on the actual inhale and exhale pressures you needed for treatment.
did that not happen?
If not then that is a solid reason to get a new full sleep study performed.

as stated in my original description, sleep study DONE! Perhaps you missed that because of my overly long diatribe? sorry about that.

1. Is my asking for a current sleep study unwarranted, given that I had one last done two years ago? I am wondering if the machines are not actually malfunctioning, but there has been a change in my sleep pattern.[/quote]
sleep changes from hour to hour and night to night. you've got an auto machine, and it's treating you adequately. most people try to avoid the 'fun' of sleep studies if they can do so.
Thanks

2. What kind of sleep specialist should I be seeing? I thought the pulmonologist was a sleep specialist, but apparently not.[/quote]again, what problem do you think needs fixing, or do you just want to spend money on doctor visits?
as stated, the problem is the significant (up to 40%) decrease in cognitive functions with severe headaches, when I went from the 700m to the 760p. My pulmonologist stated "I am not a sleep specialist, that's what you need" but I do not know what type of specialist she refers to. Does anyone know what that means, or was she trying to refer me out because I am too much trouble for her. My cyncial view is that more and more physicians are driven more an more by attorneys for anyone that appears "strident" (as opposed to a passively inactive unassertive patient). My insurance pays most of the visit fees.

3. Is it realistic (given the costs to the DME) for me to make the request in #3 (to find a machine that works).[/quote]
no, it's easy to test a machine to see if the pressures are right.
YOu appearr to be answering a question other that what I am asking, if you mean by testing whether pressures are right, using a momometer or something. Momometer will working with non auto bipap settings , testing the air flow, is it what it says it is. auto settings require actual apenas to see if the sensor is working to respond with the right amount of pressure. I have had several companies tell me there is no reliable way or easy way to test this. But my question was not about that, it was about whether the algorithm is working to treat my apenas, and whether a DME is willing to let me try several machines to see which one works. The "realistic" question was about whether a DME will find this costs too much on their end, because I suspect they are not in the business of renting, but selling, and if they let me use a machine to test it out, they no longer have a new machine to sell, costing them 1000 plus dollars per unit they let me try. So I'm asking if this is the case, or is there a way to get a dme to be interested in renting several diffenent machines to find one that delivers an algorithm that works for me sleep apnea issues.

4. Other thoughts?
you seem to be searching for a problem to solve.
perhaps you missed the problem from my original description, since it was rather lengthy. When I switched from the broken 700m to the 760p, there was an immediate up to 40% decline in cognitive functions, alertness, with severe headaches. In what way, then, do you think i am searching for a problem to solve?

drzman49 wrote:as stated, the problem is the significant (up to 40%) decrease in cognitive functions with severe headaches, when I went from the 700m to the 760p. My pulmonologist stated "I am not a sleep specialist, that's what you need" but I do not know what type of specialist she refers to. Does anyone know what that means, or was she trying to refer me out because I am too much trouble for her. My cyncial view is that more and more physicians are driven more an more by attorneys for anyone that appears "strident" (as opposed to a passively inactive unassertive patient). My insurance pays most of the visit fees.

I can't see where moving to a *better* machine would cause the problems you're describing.

drzman49 wrote: YOu appearr to be answering a question other that what I am asking, if you mean by testing whether pressures are right, using a momometer or something. Momometer will working with non auto bipap settings , testing the air flow, is it what it says it is. auto settings require actual apenas to see if the sensor is working to respond with the right amount of pressure. I have had several companies tell me there is no reliable way or easy way to test this. But my question was not about that, it was about whether the algorithm is working to treat my apenas, and whether a DME is willing to let me try several machines to see which one works. The "realistic" question was about whether a DME will find this costs too much on their end, because I suspect they are not in the business of renting, but selling, and if they let me use a machine to test it out, they no longer have a new machine to sell, costing them 1000 plus dollars per unit they let me try. So I'm asking if this is the case, or is there a way to get a dme to be interested in renting several diffenent machines to find one that delivers an algorithm that works for me sleep apnea issues.

determining whether or not the machine is functioning is as simple as zooming in on the flow trace in sleepyhead, and looking for places where you stop breathing that aren't flagged, then checking to see if they're *AT LEAST* 10 seconds long. if there are unflagged apneas, then your machine isn't functioning properly. besides that, about all that's left is checking pressure.

no DME is going to set up a simulation that you desire.

ship the machine off to acbio.com and let them give it a once over.

The reason people don't want to answer the questions as you asked them is that you're asking the wrong questions. Your therapy is objectively working. It's extremely unlikely that there's anything wrong with your machine. And it's very unlikely that going from a CPAP to a BiPAP machine would cause the problems you describe. Whatever issues you're having with your energy, etc., it they do not seem to be due to apnea since you aren't having apnea with your machine. Instead of trying to fix something that's not broken, perhaps you should talk to your doctor about other things that might be causing your fatigue and lapses in concentration. A good place to start is always with sleep hygiene.