Newbie

[palerider]

Bear with me.

Bear with ME.

OMG, don't anybody misspell it 'bare with me'.

??Inside "cpap humor" joke?

I'm not sure... 'bear with me' is proper... but I guess granny wants to tease you... or maybe she just likes the gif...

my comment as 'don't say 'bare with me', because I'm a bit scared of what kinda gif she might post..... BARE... get it?

[mike291068]

methinks she thought I misspoke joke's on her IMO

gotta love internet forums. I totally get it. It would be funny if I indeed misspoke but nevertheless....

[Janknitz]

Hopefully I don't get crucified and it's ok for the "I told you so's" lol but I posted this on other thread also... I actually heard back from my doc!! Via email, He said my numbers look good and based on the awakenings and our original consultation ordered a titration test at sleep lab. For whatever reason today I felt totally spaced out. I'm thinking of going back to 5 and see how that goes. Aerophagia isn't terrible but still there. I learned my lesson and will be more patient going forward. No scolding necessary. Please and thank you!

Oh and he made no reference to me changing the settings, who knows if he even noticed??

I didn't read your original thread (or don't remember it) so I don't know why you were so worried about his response, but he does seem to be looking at the data and concerned about your issues. That's more than most doctors who tell people to "just use the machine".

[mike291068]

When I was talking about getting crucified, I was referring to double posting(the other thread) and offending any members on here lol. I am not that worried but I know how these things go sometimes. There's no easy way of communicating it at this point. Peace!

And regarding the doc, you are right, I am pleasantly surprised at his response time this time around.

[Keeska]

I have found that most, if not all, of the docs I see don't remember my case or what 's going on with me, or when they saw me last, or even if they saw me. If it's not documented, it didn't happen. To them, I'm just one of the 30-or-so patients they saw that day. My Neurologist, who is also a sleep specialist, told me that when he gets home after work, he doesn't even remember which patients he saw that day. Can't say I blame him. So, I figure that since they don't really care about me (I realize that some docs really do care), I'll have to care about myself, which is what you seem to have been doing. Since you know about your condition and your equipment, you be the expert on you, and if necessary, you can call on the doc if you need him.

On the other hand, if he does remember, and does get huffy, remain calm, tell him you'll be good and do what he says, go home, and keep doing what you're doing. Or, follow his advice. It's your choice. Sometimes you have to be your own doctor. Most of the time, actually.

[mike291068]

I have found that most, if not all, of the docs I see don't remember my case or what 's going on with me, or when they saw me last, or even if they saw me. If it's not documented, it didn't happen. To them, I'm just one of the 30-or-so patients they saw that day. My Neurologist, who is also a sleep specialist, told me that when he gets home after work, he doesn't even remember which patients he saw that day. Can't say I blame him. So, I figure that since they don't really care about me (I realize that some docs really do care), I'll have to care about myself, which is what you seem to have been doing. Since you know about your condition and your equipment, you be the expert on you, and if necessary, you can call on the doc if you need him.

On the other hand, if he does remember, and does get huffy, remain calm, tell him you'll be good and do what he says, go home, and keep doing what you're doing. Or, follow his advice. It's your choice. Sometimes you have to be your own doctor. Most of the time, actually.

Thanks for the help! Good Stuff!! This thread was dangerously close to going off the rails due to some of the other "helpful" comments At this point, I don't know this doc well enough to gauge his level of "interest" in me. I do know he seems to be extremely busy as his workload seems to be overwhelming. His quick reponse to my latest question is encouraging and I'm hopeful that he does care(I think he does and I'm giving him the benefit of the doubt until I see good reason to not).


I am guessing his job is not easy, dealing with so many patients and with varying degrees of interest in their own treatment, varying degrees of "compliance", etc etc. I am guessing I am on the extreme end when it comes to my own interest in my own treatment. I want to figure this out yesterday! and with all this info out here it's crazy for me not to find my own answers if he's not responding in a timely manner. Trying to be patient but difficult as I already know if I had followed his timeline I would be well into 2020 to be even where I am now(hope that makes sense). And still with a long way to go.


My feeling is he is a good doctor trying to do his job with an extremely heavy workload. This forum has been invaluable and again, thanks for the helpful comments.

[ChicagoGranny]

methinks she thought I misspoke joke's on her IMO

If you think that, then you failed to see what word was emphasized in my post.

[mike291068]

methinks she thought I misspoke joke's on her IMO

If you think that, then you failed to see what word was emphasized in my post.

Actually it appears some much more intelligent than I forumites misinterpreted whatever you were trying to convey. I made an assumption based on their assumption which OBVIOUSLY was way off base. Such is the nature of this way of communicating I suppose. Anywho - I apologize if you think I misanalyzed your post but thank you for your helpful comments - I think we've beat this horse, let's get back to the matter at hand lmao. Peace!

[Janknitz]

On the other hand, if he does remember, and does get huffy, remain calm, tell him you'll be good and do what he says, go home, and keep doing what you're doing. Or, follow his advice. It's your choice. Sometimes you have to be your own doctor. Most of the time, actually.

I would suggest one other approach you may try if the doctor ever gets huffy.

Put your foot down. This is your body, your health. Tell the doctor exactly that, and that you want an active role in your care. You want your doctor to partner with you to optimize your health, not dictate from on high. If the doctor is worth his/her salt, the doctor may hear what you say and respect you for saying it.

Or not. If the doctor is a prick, it's his or her loss, because you can dump the doctor or work around him/her.

Doctors are not gods, and part of the reason some of them think they are is because we let them. We don't have to do that any more, especially for this kind of specialty which does not concern imminent life and death decisions. Remember that any doctor can prescribe a CPAP. So you don't need the pompous ass who thinks he or she is anointed by G-d almighty.

[palerider]

Well said! *Round of applause*

[mike291068]

My latest note to doc

"thanks for the quick response! I realize I am still very early on in my treatment but do you think is makes sense to try raise the minimum pressure at this point. I have found a wealth of information online including Oscar software(not sure if you've heard of it but it is a great tool - it analyzes the sleep data). I am already seeing huge potential with this treatment and want to optimize it ASAP. Based on how I feel and the sleep data I've reviewed to date, it "feels" like we should raise the minimum pressure. I understand the implications this may have on the aerophagia but with close monitoring(by me of course - I understand I am not your only patient this sounds like the best route. I know you are busy and appreciate your help.


Thanks, Mike"

And his reply:

"Mike,

We could certainly do that though at the same time, I still think that you should proceed with getting studied in the sleep lab. The minimum pressure is currently set at 5 cm. The average median pressure that you are receiving is 7 cm. We could consider increasing the minimum pressure to 8 cm and leave the maximum pressure at 20 cm. Alternatively, we could simply switch your machine to a fixed pressure of 10 cm (which corresponds to the average 95th percentile pressure that your are currently receiving). Either option should be reasonable. Please let me know your thoughts or if you have something else in mind. Thanks."

Again I am pleasantly surprised with the quick followup. Not sure what's going on but I'm not complaining

Any thoughts?

[Pugsy]

Does the doc know about the aerophagia issues?

[mike291068]

Yes I mentioned in prior email and in that latest as well. I'm a little surprised he didn't make mention of it at all?? I went back to 5 last night and seemed to sleep ok but felt like hell this morning and most of the day but am now feeling better. I am shocked he suggested going to a straight 10?! I don't think that's a good idea at this point. I do like that he's giving me options though. Is it your opinion that the titration study is necessary if not helpful? I can't imagine me sleeping well if at all in a lab. I'm not so sure about this but if it will definitely uncover something that won't be easily discovered without I will do.

[Pugsy]

I think he probably forgot the aerophagia thing....either that or he is one of the people who don't see a relationship between pressure and aerophagia.

I am on the fence about the in lab titration sleep study. The only thing that might be gained is sleep status or sleep stages...assuming you actually sleep soundly. I had an in lab titration study....full night devoted to it and I simply couldn't sleep between the idiot asshole sleep tech trying to force a mask on me that I couldn't use and telling me big whopper lies and the foreign environment....I got 156 minutes of sort of sleep with only 6 minutes in REM where my OSA is worse. Waste of my time and money for sure and if I had it to do over again I wouldn't do it unless I was having serious problems getting issues sorted out at home with the apap machine.
I ended up doing my own self titration at home anyway.

I think I would ask him exactly what he hoped to learn with it or was he just going on a fishing expedition. What is he hoping to catch.

Maybe schedule it for a few weeks in the future and give yourself time to get your sleep quality under better control and improve the chances of actually getting some sleep. If you get your problems sorted out before the in lab study....cancel it.

BTW that 90% number is just a number and not any sort of holy grail of optimal settings. All a 90 % number is...is a number that you were at OR BELOW for 90% of the night. It is easily skewed to the high side by relatively short periods at a higher number.
Often makes things look a lot worse or dramatic than they really were.
I don't have a good 90% number for pressure as an example but I do have a good example of leak numbers looking worse than they really were. Same principle applies to pressure and you can see how easily the overall 90/95% numbers were elevated by just a short period in large leak. ResMed report...they use 95% instead of 90 % but the definition is still the same.
viewtopic.php?f=1&t=108724&p=1036669&hi ... t#p1036669

I used to have a similar example for Respironics pressures but the links are broken. I need to fix another one but it showed a 90% pressure of 17 cm....but my overall average was around 10. To put me on 17 cm fixed pressure....overkill for sure and not much fun.

[mike291068]

Sounds reasonable - I am guessing the test wouldn't be scheduled for a few weeks out anyway due to their schedule. One major concern is that these numbers are based on me being asleep only half(estimating) the time due to my poor sleep quality and the numbers are completely inaccurate to begin with.