I need serious help with my CPAP therapy

OK, I know I have irritated a lot of people here with OT posts and stuff. But I do use CPAP and it has helped me tremendously through the years. I am 100% compliant. For years, I just ran my S8 APAP with a Resmed Quattro FFM and things were great. I got a lot better during that period. After that S8 APAP died, I got replacement machines and got things back to normal. However, after the tonsillectomy of my spring, I have run into major problems.

Basically, I think I need to start all over again. I think I need to start all over again with a new sleep study. I have not had a sleep study since real late 2009 or real early 2010. And since that sleep study a ton of things have changed. 1) I increased my klonopin dose from 2 mg to 4 mg about five months after that last sleep study, in May 2009. 2) Ive gained more weight, Im about twenty pounds heavier now than then. 3) I had my tonsils removed this past April and after the recovery was over and i came off all the painkiller drugs, I could definitely I was WAAAYYY more sensitive to CPAP pressure. 4) Im older 5) Ive developed chronic upper left side stomach pain that I deal with by taking Prilosec everyday. I dont cycle the Prilosec, I stay on.

I got a Resmed autoVPAP recently. They gave it to me with the "default" settings. Pressure support of 4. Trigger and Cycle settings of medium on both. Ti min of .3 and Ti max I cant remember. EPAP set at 4 with max IPAP of 14, although my 95th percentile is currently in the low to medium 11s, oftentimes going down into the 10s.

I tried the Resmed S9 AutoVPAP at these settings and guess what? I cant tolerate it!!!! This is what it does: causes this feeling of my lungs or being overinflated with air, like its too much. And it makes me feel mildly revved up and I cant fall asleep. I cant stay asleep if I fall asleep on it. And I get upper left side stomach pain on it, even though its a premo BIPAP.

Before the tonsillectomy, any minimum sustained pressure of 10 on either an APAP or an Auto Bipap and I fell apart. But I could tolerate that absolutely fine...enjoyed it even. After the tonsillectomy and this is no shit, I cant tolerate a pressure of 10 anymore...hell I have to run my S9 APAP starting at 4 now. It goes up to the high 10s to the 11s now. A year ago this time, my 95th percentile was in the 14s to 15s, before the tonsillectomy.

Any comments? I think I need a new sleep study with an RT doing the study real familiar with Resmed VPAPs. Im wondering if the trigger and cycle and Ti Max and Ti Min need to be individualized for ME in a titrated sleep study.

Frustrated....

Eric

SuddenlyWornOut45 wrote:Any comments? I think I need a new sleep study with an RT doing the study real familiar with Resmed VPAPs. Im wondering if the trigger and cycle and Ti Max and Ti Min need to be individualized for ME in a titrated sleep study.

Eric,

I agree. It is not unusual to need follow up titration studies after having significant changes. You have had several significant changes, meaning that you could have totally different issues and need new solutions. What is holding you up from making an appointment to see your sleep doctor?

-john-

Well, I just saw my sleep doc a few weeks ago. When I bring up these issues, he does this. He shrugs his shoulders and apologizes and tells me "there is nothing he can do for me further." I am left flabbergasted by his comments, attitude and responses to my problem. I have actually wondered about the guy's competence, even wondered if he is all there.

For the record, this guy is at a teaching hospital and has some good credentials. It is a combination pulmonary medicine/sleep medicine practice. All the doctors in this unit are combined pulmonary specialists and critical care specialists and my doctor is also an Internal medicine specialist on top of this. He is board certified in sleep medicine, pulmonary medicine and critical care medicine.

This guy I do not believe is focused on sleep medicine, per se. He and all the other doctors in this pulmonary medicine/sleep med unit spend three weeks of the month in the hospital, doing rotations and teaching and taking care of hospitalized inpatients. The week left over, they spend in the office seeing outpatients like myself, spread out between sleep apnea patients and pulmonary disease patients.

The impression I get is this guy is not all there somehow and not "into" sleep medicine. I got the recommendation from him from my psychiatrist, who thinks a lot of this sleep/pulmonary/critical care guy. But I have not seen anything about him that impresses me. My psychiatrist and I kind of conflict regarding sleep apnea and CPAP, my shrink seems somewhat irritated or bored or something when I talk about my CPAP therapy. Like he thinks sleep apnea has nothing much to do with mood disorders or anxiety disorders. He's just into psychopharmacology and he's good at that.

I have done better when I was using this one guy who did nothing but sleep medicine, he knew all the gear, did not seem like he was in a rush and so on.

Several people offline have suggested strongly that I get a new sleep medicine doctor, but I am so tired of going to a new sleep medicine doc. If I did that would be like the fifth sleep medicine doctor Ive gone thru since 2007. If I had to do it all over again, I would have stayed with this one guy who all he did is sleep medicine. All the others Ive seen, sleep medicine seems like second string JV to them, they seem bored with it. Like, they'd rather be treating pneumonia patients or COPD patients or whatever.

Eric

jweeks wrote:

SuddenlyWornOut45 wrote:Any comments?
Eric,

I agree. It is not unusual to need follow up titration studies after having significant changes. You have had several significant changes, meaning that you could have totally different issues and need new solutions. What is holding you up from making an appointment to see your sleep doctor?

-john-

SuddenlyWornOut45 wrote:OK, I know I have irritated a lot of people here with OT posts and stuff.

More like you have pissed off many people here.

I for one will not waste my breath helping you, not that you would listen to a socialist like myself. I'm now off to work the late shift of xmas eve, should be interesting.

SuddenlyWornOut45 wrote:OK, I know I have irritated a lot of people here with OT posts and stuff. But I do use CPAP and it has helped me tremendously through the years.

Frustrated....

Eric

I wouldn't worry about that. I'm sure there are still quite a few people here who would be willing to help you.

Got any reports you could post for people to see and make suggestions?


Merry Christmas!


Den

.

I could do a download from my S9 but I dont know how to post it here, how do you post it here?

thanks,

Eric

Wulfman... wrote:

SuddenlyWornOut45 wrote:OK, I know I have irritated a lot of people here with OT posts and stuff. But I do use CPAP and it has helped me tremendously through the years.

Frustrated....

Eric

I wouldn't worry about that. I'm sure there are still quite a few people here who would be willing to help you.

Got any reports you could post for people to see and make suggestions?


Merry Christmas!


Den

.

Eric,

See if you can understand/follow Pugsy's instructions in this thread.
(You'll need to take out the spaces when you copy and past it into a browser)

http : // www . cpaptalk . com/viewtopic . php?f=1&t=81072&p=737779#p737779


Den

.

SuddenlyWornOut45 wrote:I could do a download from my S9 but I dont know how to post it here, how do you post it here?

thanks,

Eric
.

Reading this posting should help you posting your sleepyhead data: viewtopic.php?f=1&t=81072&p=737779#p737779

Thanks for posting the link, Bill.


Eric,
All you have to do is click on the link Bill posted.


Den

.

SuddenlyWornOut45 wrote:I have done better when I was using this one guy who did nothing but sleep medicine, he knew all the gear, did not seem like he was in a rush and so on.

What happened to "this one guy" and why did you quite seeing him? Could you call his office back and try to reestablish yourself as a patient?

Or ask your PCP to simply order a new sleep study. You have stated enough changes that warrant another sleep study or at least another titration study to see what your pressure needs are now that things have changed.

As for your ongoing problems with the Resmed S9 VPAP Auto: You wrote

I got a Resmed autoVPAP recently. They gave it to me with the "default" settings. Pressure support of 4. Trigger and Cycle settings of medium on both. Ti min of .3 and Ti max I cant remember. EPAP set at 4 with max IPAP of 14, although my 95th percentile is currently in the low to medium 11s, oftentimes going down into the 10s.

When you say the 95% pressure percentile is in the low to medium 11s, where are you getting this number? And is it the 95% EPAP pressure or the 95% IPAP pressure? It makes a huge difference in understanding what's going on.

If 95% EPAP is in the low to medium 11s, that means your 95% IPAP is in the low to medium 15s because on the S9 VPAP Auto, the difference between EPAP and IPAP always remains constant at the PS setting. Since your PS = 4, that means that the IPAP is always 4cm greater than the EPAP. So when EPAP = 11, that means IPAP = 11+4 = 15.

If your 95% IPAP is in the low to medium 11s, that means your 95% EPAP is in the low to medium 7s. When IPAP = 11, that means EPAP = 11 - 4 = 7.

So are your 95% pressures 15/11 or 11/7? Makes a huge difference since you are complaining about the high pressures giving you aerophagia and making it feel like your lungs are overinflated and causing you to have trouble getting asleep and staying asleep.

I tried the Resmed S9 AutoVPAP at these settings and guess what? I cant tolerate it!!!! This is what it does: causes this feeling of my lungs or being overinflated with air, like its too much. And it makes me feel mildly revved up and I cant fall asleep. I cant stay asleep if I fall asleep on it. And I get upper left side stomach pain on it, even though its a premo BIPAP.

Perhaps the problem is the fact that the PS = 4. That means that you are starting out at IPAP = 8 and EPAP = 4. It could be that a 4cm increase in pressure at the start of each and every inhalation is what's causing you to feel overinflated with air. It could be that a smaller PS might work better for you.

And since the S9 increases both IPAP and EPAP at the same time, with PS = 4 all it takes is a mere 2cm increase in pressure to get the IPAP up to that 10cm reading where you say your problems start. And when the EPAP reaches 10 cm, the IPAP = 14 cm.

It could be that if PS = 4 is the problem that you might do better on a plain old S9 AutoSet. Or it could be that you might do better on a PR System One BiPAP that allows the PS to vary through the night.

If your doctor does not seem interested in helping you with issues then you don't need him, and no point in wasting your time with him.
Unless you have a heart problem then I would recommend seeing a neurologist. In my part of the country neurologist handles most of the sleep issues.

I wish you good luck!

My sleep doctor seems like he has no interest in sleep medicine. I have seen many doctors over the past decade and a half since my late twenties. This guy gives off the vibes of, "I'd rather be somewhere else" and "this is my recovery week from my three weeks of hospital rotations and teaching residents in the hospital."

he is also...weird.

I hate to say this, but sleep apnea, although it is classified as a pulmonary disorder, AKA Sleep Disordered BREATHING, I have used a single pulmonary specialist who acted like they gave a flying fuck about treating OSA. Ive seen three pulmonary specialists who also do sleep apnea and not one of them was any good. This guy is the worst one.

I have thought about going to a Neurologist sleep medicine specialist. And just someone who is 100% sleep medicine, all the time and not as a sideline. The best sleep doc Ive had he was pure sleep medicine, nothing else. I left that guy because I had this idea that to get the best care, you really should be seeing a pulmonary oriented sleep doc. I think that is a mistake on my part.

I definitely think I need a new sleep study and get this Resmed VPAP adjusted individually. Trigger, cycle, Ti Max, Ti minimum, I have no clue how to set those up. Pressure support, Ive played with that and that makes no difference, Ive lowered it to 2, same problem. I think it has something to do with my rate of breathing. Like, the transition from EPAP to IPAP and vice versa is not correct. And I might be getting too much air shot down my throat, especially while awake waiting to go to sleep. Before the tonsillectomy, I did not have that problem unless I set the minimum pressure higher than 10.

The Resmed VPAP, you can adjust the speed and way it transitions from EPAP to IPAP and vice versa by tweaking the trigger, cycle and Ti max and Ti minimum settings. Those settings control how much air is shoved down my airway as much as pressure support and my basic EPAP and IPAP settings.

Eric

Bill44133 wrote:If your doctor does not seem interested in helping you with issues then you don't need him, and no point in wasting your time with him.
Unless you have a heart problem then I would recommend seeing a neurologist. In my part of the country neurologist handles most of the sleep issues.

I wish you good luck!

SuddenlyWornOut45 wrote: I have thought about going to a Neurologist sleep medicine specialist. And just someone who is 100% sleep medicine, all the time and not as a sideline. The best sleep doc Ive had he was pure sleep medicine, nothing else. I left that guy because I had this idea that to get the best care, you really should be seeing a pulmonary oriented sleep doc. I think that is a mistake on my part.

So what is preventing you from calling the "best sleep doc" you've ever had back? You made a mistake in leaving him, but it seems that the bigger mistake is not going back to him. What's stopping you from doing that?

My PCP would not order a sleep study for me. My PCP would refer me to a sleep specialist. Thats what they do where Im at, referral to a sleep specialist.

They got my 95th percentile based on downloads from my S9 Autoset APAP. The way I run the thing since last May is very conservative and the weakest way you can run the thing, wide open 4 to 20. When I or my sleep doctor does a download, the 95th percentile has been in the 11s since this past late May 2013. Before the tonsillectomy, 95th percentile was 14 to 15, changed depending on things Id do.

They set the Resmed auto VPAP EPAP and IPAP settings based upon my S9 Autoset APAP 95th percentile. I actually had to lower it when I got it, he had my EPAP as 7, which had my starting IPAP as 11!!!! Like, I cant even tolerate a sustained 10 anymore on an APAP. I think this sleep medicine doctor is an idiot, he does not listen to me. Only reason he is doing this is because my Internal medicine doctor is real concerned about me and is putting pressure on my sleep doc to do something. My sleep doc seems to listen more to my Internal med doctor than to what I tell the guy.

I will try and put up a download from my S9 Autoset APAP soon on here. I need to learn how to read those things in detail anyway, all I know how to read them now is real basic stuff like my pressures, leak rate, 95th percentile, AHI, basic stuff like that. The advanced graphs and stuff like that I dont know how to interpret at all.

Eric

robysue wrote:

SuddenlyWornOut45 wrote:I have done better when I was using this one guy who did nothing but sleep medicine, he knew all the gear, did not seem like he was in a rush and so on.

What happened to "this one guy" and why did you quite seeing him? Could you call his office back and try to reestablish yourself as a patient?

Or ask your PCP to simply order a new sleep study. You have stated enough changes that warrant another sleep study or at least another titration study to see what your pressure needs are now that things have changed.

As for your ongoing problems with the Resmed S9 VPAP Auto: You wrote

I got a Resmed autoVPAP recently. They gave it to me with the "default" settings. Pressure support of 4. Trigger and Cycle settings of medium on both. Ti min of .3 and Ti max I cant remember. EPAP set at 4 with max IPAP of 14, although my 95th percentile is currently in the low to medium 11s, oftentimes going down into the 10s.

When you say the 95% pressure percentile is in the low to medium 11s, where are you getting this number? And is it the 95% EPAP pressure or the 95% IPAP pressure? It makes a huge difference in understanding what's going on.

If 95% EPAP is in the low to medium 11s, that means your 95% IPAP is in the low to medium 15s because on the S9 VPAP Auto, the difference between EPAP and IPAP always remains constant at the PS setting. Since your PS = 4, that means that the IPAP is always 4cm greater than the EPAP. So when EPAP = 11, that means IPAP = 11+4 = 15.

If your 95% IPAP is in the low to medium 11s, that means your 95% EPAP is in the low to medium 7s. When IPAP = 11, that means EPAP = 11 - 4 = 7.

So are your 95% pressures 15/11 or 11/7? Makes a huge difference since you are complaining about the high pressures giving you aerophagia and making it feel like your lungs are overinflated and causing you to have trouble getting asleep and staying asleep.

I tried the Resmed S9 AutoVPAP at these settings and guess what? I cant tolerate it!!!! This is what it does: causes this feeling of my lungs or being overinflated with air, like its too much. And it makes me feel mildly revved up and I cant fall asleep. I cant stay asleep if I fall asleep on it. And I get upper left side stomach pain on it, even though its a premo BIPAP.

Perhaps the problem is the fact that the PS = 4. That means that you are starting out at IPAP = 8 and EPAP = 4. It could be that a 4cm increase in pressure at the start of each and every inhalation is what's causing you to feel overinflated with air. It could be that a smaller PS might work better for you.

And since the S9 increases both IPAP and EPAP at the same time, with PS = 4 all it takes is a mere 2cm increase in pressure to get the IPAP up to that 10cm reading where you say your problems start. And when the EPAP reaches 10 cm, the IPAP = 14 cm.

It could be that if PS = 4 is the problem that you might do better on a plain old S9 AutoSet. Or it could be that you might do better on a PR System One BiPAP that allows the PS to vary through the night.

Because he left the practice he was in that I went to. Without going into sordid details, he had a meltdown, I think. I got this letter in the mail saying he was leaving the practice and if I wanted to stay with him I needed to say so now and call a phone number. I did not do that because I was using this current guy at that time. What happened was that guy who left his practice got real involved in some big lawsuit against some guy regarding sexual molestation when the sleep doc was a teenager decades ago. And the sleep doc filed a lawsuit...he was on national TV and everything. I saw it on FOX News or MSNBC.

After he left his old practice, he disappeared. I actually know where he is, but its in another state across the border. I just dont feel comfortable using him anymore. He was a psychiatrist before he went into sleep medicine.

I think the idea of switching over to Neurology based sleep med docs might be a good idea for me. Get off the klonopin...get some slow wave sleep, get my pressures down from going off the klonopin, figure out the stomach pain thing. Lose weight again and keep it off this time. A big part of it is I just dont feel like I have a support system with the doctors I use, even though I have group health insurance and have access to some pretty good physicians, except for my Internal med doc and my psychiatrist, the sleep docs I use just dont seem to spend much time or effort on my case.

Eric

robysue wrote:

SuddenlyWornOut45 wrote: I have thought about going to a Neurologist sleep medicine specialist. And just someone who is 100% sleep medicine, all the time and not as a sideline. The best sleep doc Ive had he was pure sleep medicine, nothing else. I left that guy because I had this idea that to get the best care, you really should be seeing a pulmonary oriented sleep doc. I think that is a mistake on my part.

So what is preventing you from calling the "best sleep doc" you've ever had back? You made a mistake in leaving him, but it seems that the bigger mistake is not going back to him. What's stopping you from doing that?