Newbie

[mike291068]

So I met with sleep doc. I wish I had a recording of the conversation. Not sure what to make of much of what he said. He wants me to go with a fixed pressure of 7 for now?? I told him I wasn't sure if I wanted to but would think about it.

He also wants me to stop tracking my sleep and posting on here Go figure. I told him "no offense doc, but had I sat back and waited for the process to play out I would still be on a mask that gives me aerophagia and severe diarrhea, there is no way I am going to stop now" Mind you our next consult was scheduled for 12/10. I think I may have offended him with my responses and opinions, he said I was "a very brilliant man" which I am thinking may have been slightly sarcastic There were several other things he said that I questioned but anyway. On our original consult, I had mentioned the possibility of REM sleep behavior disorder which he immediately scoffed at and shot down. Today, he was not so sure and said we will have to find out. I am going to do inlab titration study to hopefully get some answers. He didn't like me bringing up the fact that there is a strong possibility that I won't be able to sleep to get any meaningful results. Ultimately, I do think he wants to help but he seems somewhat resistant to change/modify his SOP.


Also, I found it interesting that he had no idea Oscar and/or these forums were even out here. I brought him a printout of last night's data and he said he wasn't smart enough to figure out what it meant.

Incidentally, I had few(too many!) drinks last night and forgot to put my memory card in the machine by myair said my AHI was .8 my lowest to date!

I tried to understand his reasoning for wanting to go to a fixed pressure of 7 but we weren't understanding each other. Any input?

I attached Thursday night for the heck of it

[Jas_williams]

Many Dr’s believe fixed pressure provide a better sleep quality, so they use the auto settings or an in Lab Titration to find your optimal pressure and then set your machine to that. I don’t agree, your sleep changes from night to night, when your on your back you need more pressure.


Your machine is not making any major pressure changes based on Thursday night graph so I would stick with your current settings unless you feel it’s disturbing your sleep.

[palerider]

So I met with sleep doc. I wish I had a recording of the conversation. Not sure what to make of much of what he said. He wants me to go with a fixed pressure of 7 for now?? I told him I wasn't sure if I wanted to but would think about it.

a fixed pressure of 7 will lead to noticeably *worse* sleep... I guarantee it... Maybe he realizes that when you're sleeping well, you won't have any reason to give him any more money... I dunno, or he's a dumb ass control freak... *shrugs*

He also wants me to stop tracking my sleep and posting on here Go figure.

THOU SHALT HAVE NO OTHER GODS BESIDES ME!

. I am going to do inlab titration study to hopefully get some answers.

Entirely up to you.

I brought him a printout of last night's data and he said he wasn't smart enough to figure out what it meant.

Go figure.

I tried to understand his reasoning for wanting to go to a fixed pressure of 7 but we weren't understanding each other. Any input?

My vote is for "incompetence".

[palerider]

Many Dr’s believe fixed pressure provide a better sleep quality, so they use the auto settings or an in Lab Titration to find your optimal pressure and then set your machine to that. I don’t agree, your sleep changes from night to night, when your on your back you need more pressure.

Sleep even changes from hour to hour as we go through the various stages.

Your machine is not making any major pressure changes based on Thursday night graph so I would stick with your current settings unless you feel it’s disturbing your sleep.

If it were me, I'd bump the min to 8.

[mike291068]

Many Dr’s believe fixed pressure provide a better sleep quality, so they use the auto settings or an in Lab Titration to find your optimal pressure and then set your machine to that. I don’t agree, your sleep changes from night to night, when your on your back you need more pressure.

Sleep even changes from hour to hour as we go through the various stages.

Your machine is not making any major pressure changes based on Thursday night graph so I would stick with your current settings unless you feel it’s disturbing your sleep.

If it were me, I'd bump the min to 8.

Good points. I was under the impression that I should go to the highest pressure possible where I was still comfortable. This is tricky with me with the aerophagia issue. The one night I upped minimum to 8 was not good with the Aerophagia and too much pressure. My plan was/is to go up in small increments. He seems to think 7 may in fact be "my number" but I just don't think he liked me questioning his expertise ?? I kind of get it and it doesn't surprise me that this might be the "correct" way to do it from the sleep doc's perspective but who knows.

The sad thing is I trust you all more than I trust his judgment(no offense

I think I need to do an inlab titration to get some further insight into what exactly is going on with me. I think it is more than just sleep apnea as I am still having regular awakenings despite getting periods of good, restful sleep. The only concern again, is that I won't be able to sleep. but it shouldn't stop me from at least trying. As always, thanks for input..

[palerider]

Good points. I was under the impression that I should go to the highest pressure possible where I was still comfortable. This is tricky with me with the aerophagia issue. The one night I upped minimum to 8 was not good with the Aerophagia and too much pressure. My plan was/is to go up in small increments.

Ok, in that case, go to 7.2 and sneak up on 8, like Zonker did, it'll never see you coming.

He seems to think 7 may in fact be "my number" but I just don't think he liked me questioning his expertise ??
I kind of get it and it doesn't surprise me that this might be the "correct" way to do it from the sleep doc's perspective but who knows.

I know... if 7 were 'your number' then your pressure wouldn't be going up over 7 as it is now.

[zonker]

Ok, in that case, go to 7.2 and sneak up on 8, like Zonker did, it'll never see you coming.

meerkat.gif

palerider speaks the truth. it took me a very long time to get my pressure up to where it is now, where it is actually helping my sleep apnea.

there was a time, maybe this time last year, when i'd never believe i could tolerate a min of 15.4 and a max of 20. that aerophagia is hard to beat, but it can be done, if done slowly. i gave each little .2 of increase as much as weeks to settle in. i had to go forward, then back, then forward. but i won in the end.

good luck, mike.

[mike291068]

thanks palerider/zonker. That is what I suspected and I guess the last time I will give this doc the benefit of the doubt. I think he's trying to help but just doesn't get it(or perhaps it's more nefarious like palerider said) but I have to believe this guy has enough on his plate than to keep me hanging around lol. It seems to me this hospital/doc has a neverending supply of patients and in its best interest to get me to the right pressure setting ASAP and out of his hair but who knows?

[Pugsy]

"I don't know"

words we don't often hear from doctors and a lot of people think doctors shouldn't ever be in a position to say those words but in reality no one can be immune from having to say those words if they have half a brain.
Some doctors think they are gods and shouldn't ever even need to say those words....some doctors feel like they are letting their patients down if they say those words because they think patients need a strong all knowing doctor. Hell, maybe some people do but not me.
I actually respect a doctor more when they can say "I don't know"....as long as he can also say "I can still try to help and will try to help and try to learn".

Learning doesn't end with the graduation and obtaining of those fancy letters after their name.
The doctors to be leery of.....those that think they don't need to learn any more and are unwilling to even try.

We as lay people need to quit putting doctors up on pedestals because they aren't gods despite what some of them might think.

There are good doctors and mediocre doctors and some doctors are so bad I wouldn't let them treat my dead dog.

[mike291068]

Ok, in that case, go to 7.2 and sneak up on 8, like Zonker did, it'll never see you coming.

meerkat.gif

palerider speaks the truth. it took me a very long time to get my pressure up to where it is now, where it is actually helping my sleep apnea.

there was a time, maybe this time last year, when i'd never believe i could tolerate a min of 15.4 and a max of 20. that aerophagia is hard to beat, but it can be done, if done slowly. i gave each little .2 of increase as much as weeks to settle in. i had to go forward, then back, then forward. but i won in the end.

good luck, mike.

Zonker - I'm curious what you started at? I assume you saw some benefits long before now "where it is actually helping my sleep apnea". That is actually very encouraging as I am seeing some benefits now but I know there is a long way to go. Like you say I can't imagine 15 right now.

[mike291068]

"I don't know"

words we don't often hear from doctors and a lot of people think doctors shouldn't ever be in a position to say those words but in reality no one can be immune from having to say those words if they have half a brain.
Some doctors think they are gods and shouldn't ever even need to say those words....some doctors feel like they are letting their patients down if they say those words because they think patients need a strong all knowing doctor. Hell, maybe some people do but not me.
I actually respect a doctor more when they can say "I don't know"....as long as he can also say "I can still try to help and will try to help and try to learn".

Learning doesn't end with the graduation and obtaining of those fancy letters after their name.
The doctors to be leery of.....those that think they don't need to learn any more and are unwilling to even try.

We as lay people need to quit putting doctors up on pedestals because they aren't gods despite what some of them might think.

There are good doctors and mediocre doctors and some doctors are so bad I wouldn't let them treat my dead dog.

yes I was surprised when he said he wasn't smart enough to interpret the Oscar data. I think he was being somewhat patronizing but who knows. He's foreign and there's a bit of a communication gap. My whole meeting with him was very comical. In hindsight, I almost think he thought I created those Oscar graphs myself manually. He asked me how often I "do this"(analyze the data). His response was interesting when I told him everyday!! Like I said it didn't dawn on me at the time but I don't think he understood that it literally takes 2 minutes to analyze the data. This is when he told me I should stop tracking my sleep and coming on here lmao

And I think you're right, because things are changing so dramatically now, not only in the sleep apnea arena but in general, some of these doctors especially the older ones need to almost forget or at least revise a lot of they learned in med school and be open and willing to change. All the data that is available out here is making things very interesting and I'm sure frustrating in some instances for doctors as they have to deal with misinformed patients(present company aside of course)

[zonker]

Zonker - I'm curious what you started at? I assume you saw some benefits long before now "where it is actually helping my sleep apnea". That is actually very encouraging as I am seeing some benefits now but I know there is a long way to go. Like you say I can't imagine 15 right now.

fair question. but not an easy one to answer. as you can see under my avatar, i've been using apap since the middle of 2015. like most people, i had been diagnosed with sleep apnea, given a machine and a pressure range of 5-20. that was a very lazy prescription from my sleep doctor. but again it's what most people get.

came here and found out that the majority of folks should be starting out at 6-7 as a minimum. so i was determined to follow suit. that's when i ran into that aerophagia "stuff". how could i possibly treat my apnea as forum members were telling me if i couldn't stand it because of the swollen tight belly? were these people crazy? yet i could see others were improving by following their recommendations!

it was a crazy circle. and so, for the first 3 years of therapy, i was trying to convince myself that an ahi of 2 or 3 was the best i could do. but i kept reading here and trying this thing, that thing, the other thing. in the meantime, i'd decided a few years ago that my intellipap machine was to blame. so decided to ditch it and get me a resperonics.

mind you, i know how privileged i am in that i'm not dependent on insurance to buy my machin, masks or supplies. on the other hand, i try to keep an eye on my money. i was raised cheap and remain so to this day, at the tender age of 65.

so i didn't want to spend a LOT of money. cpap.com had a sale on resperonics, so i bought that. it was a pretty good deal and i'm the kind of guy who can't bring himself to buy second hand.

that lasted a couple of years, then it developed a massive leak and wouldn't seal on the humidifier. i COULD have gotten it repaired, i suppose. but by then, i'd read here how the resmed products seemed to be a bit better. or at least different. so i bought my current machine.

TL;DR is i feel that my current machine(along with other things) had a massive impact on where i am now. truth to tell, i don't remember where my pressure was when i started.

EDIT: looks like on oct 3 of last year, my settings were min 8.8 and max of 20. so that answers your question. if you want to plow through my whole boring trip, please see my thread: viewtopic/t173195/zonkers-cribdoes-humi ... r%27s+crib

i don't want to go through it myself, so i'm don't really know how long it took to get from 8.8 to 15.4 but i'm sure it took months.

sorry to be so long winded. it DOES remind me that i need to update that thread to reflect changes resulting in my move from arizona back to washington state.

anyway, hope this helps!

[mike291068]

Thank you! it does help - interesting to hear other's journeys. That sounds like quite the ride.

[mike291068]

Just thought I was due for a post. I feel like I am getting there and going to raise the minimum pressure. I am tempted to go to 8 but still a little wary of the dreaded aerophagia. On Wednesday, I tried loosening my mask a bit which I think is why the large leaks. I am still having multiple wakeups but the periods of sleep are getting longer. Any thoughts?

[Pugsy]

My opinion FWIW....I see no reason to be in such a rush to go to 8 cm minimum.
You barely hit 10 cm once...and the flow limitations are next to nothing.
If you do want to increase that minimum....I would take it in very small steps though. Sneak up on it.