Losing confidence in doc, what to do

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
tommyheadleycox
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Re: Losing confidence in doc, what to do

Post by tommyheadleycox » Thu Apr 16, 2015 9:25 pm

Pugsy wrote:We have many forum members who have not only self titrated but self diagnosed.
If all that is going on is plain jane vanilla obstructive sleep apnea with no complicating factors. Takes a bit of work and education on your part but it isn't all that difficult.

Here's a trusted forum member with the latest ResMed APAP machine available.
viewtopic/t105070/For-Sale--New-AirSens ... t-650.html

or if that is a little too costly I know of a couple of forum members with some gently used apap machines.
Send me a private message if you want more information on those gently used machines.
This is really good to know. "not only self titrated but self diagnosed." So, I'm assuming that I can do it too. Thanks for the link. That's not too costly. In all honesty, I would spend any amount of money right now to get some sleep. Any amount. What's tough is, I'm so foggy I can't pick out which machine to buy. I do know one thing, without a doubt. I need to be able to see, in black and white, how I slept last night. That's where it's got to start.

Thank you for thinking of me,
Tom

tommyheadleycox
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Re: Losing confidence in doc, what to do

Post by tommyheadleycox » Thu Apr 16, 2015 9:34 pm

Wulfman... wrote:[ The first year, I tweaked my therapy with a straight-pressure CPAP. It's not that hard to do. Unless you have complicated therapy......like lots of Central Apneas, you should be able to figure it out with a data-capable machine and software to read the data.
A ResMed Elite machine is fully data-capable. Which "generation" of machines are you using? S7 - S8 - S9?

Den
.
Thanks for writing. I have an S8. Your message reminds me that tomorrow, when I go see LIncare, the co. that sold me the CPAP machine that I insist on being able to read my own data. They are pretty nice and will loan me , for free, a Resmed auto cpap for 2 weeks. I think i'm going to do that - but this time insist on getting the results myself - and then it will be ME that hands the result to the doctor in person, so I can't fall between the cracks.

Thanks again,
Tom

tommyheadleycox
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Re: Losing confidence in doc, what to do

Post by tommyheadleycox » Thu Apr 16, 2015 9:37 pm

ClarkK wrote:I was fortunate that after I walked out of my titration study after a panic attack, I was able to request a full data auto CPAP in order to find the right settings for me -- based on something I read in the forums. Armed with data and a bit more knowledge (learned in the forums), I requested a change in my settings -- using the medical professionals as a tool to get that change based on a conversation about the data. While it is possible to go it alone -- having a full data machine, pulling your own data and learning as much as you can about it, gives you ammunition to use to work with the medical professionals to optimize your therapy.
Wow, this sounds like the optimum. This is what the ideal would be for me. Team approach, but LED BY ME, for a change.
I will start tomorrow working in this direction.

Thank you very much,
Tom

tommyheadleycox
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Re: Losing confidence in doc, what to do

Post by tommyheadleycox » Thu Apr 16, 2015 9:47 pm

Thanks to everyone for such heartfelt support. I will take your collective advice. Starting tomorrow, which is the free, walk-in clinic at Lincare, the DME company. I've decided to go back and 1. Ask to borrow the Resmed auto cpap machine for free again. 2. tell them that I insist on them giving ME the results and I'LL be the one to send them to the doc, or hand them to her personally.

BTW: some factors : Overweight - 235 , 5'10". Taking Klonopin for restlless leg. but that didn't bother the sleep doctor,

thanks again, everyone,
Tom

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Nick Danger
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Re: Losing confidence in doc, what to do

Post by Nick Danger » Fri Apr 17, 2015 2:16 pm

They might not agree to give the results directly to you. If not, we can help you learn to install Sleepyhead software and read the data yourself directly from the SD card.

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kteague
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Re: Losing confidence in doc, what to do

Post by kteague » Fri Apr 17, 2015 2:39 pm

Whether they hand them to you or you simply request a copy either from them or from your doctor, in the end you have the results. I'm sure the lab has obligations regarding reporting to the ordering physician. If you use Sleepyhead to download them yourself, what they do or don't do won't have to be as big of an issue. Hate to muddy the waters here, but since you've said you take a med for restless legs, that changes my perspective. Do your restless legs affect your sleep? If so, then self titrating at home can help you find therapeutic treatment for sleep apnea but may not result in restful sleep. Even if you still choose to self titrate, if your sleep is still poor due to leg activity, you may still end up in a sleep lab, and the doctor will start with a diagnostic and titration studies. Maybe you'll get lucky and CPAP will resolve everything. Just be aware going in that it may be more than a numbers game. But one step at a time. Has your doctor gone over with you all the basic things people can do to see if their RLS responds? If not, you might want to do some reading on that - if your legs are a problem. Does the med seem to control the sensations?

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Sir NoddinOff
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Re: Losing confidence in doc, what to do

Post by Sir NoddinOff » Fri Apr 17, 2015 5:02 pm

I don't really have much to add other than to say it's a sick feeling when you see your doctor floundering around with weak excuses and lame suggestions. Another tip-off is a diploma on the wall from some island or banana republic somewhere you've barely heard of

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Wulfman...
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Re: Losing confidence in doc, what to do

Post by Wulfman... » Fri Apr 17, 2015 6:21 pm

Sir NoddinOff wrote:I don't really have much to add other than to say it's a sick feeling when you see your doctor floundering around with weak excuses and lame suggestions. Another tip-off is a diploma on the wall from some island or banana republic somewhere you've barely heard of
That would be my "sleep doctor" ( pulmonologist ).

From this place in the Dominican Republic:
University Tecnologica de Santiago, Santiago Campus


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

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archangle
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Re: Losing confidence in doc, what to do

Post by archangle » Fri Apr 17, 2015 6:41 pm

Sir NoddinOff wrote:I don't really have much to add other than to say it's a sick feeling when you see your doctor floundering around with weak excuses and lame suggestions. Another tip-off is a diploma on the wall from some island or banana republic somewhere you've barely heard of
I'll have to give that some more thought. I'm not too impressed by my doctors who had "big name" diplomas. They've given me the impression of being a little too impressed with themselves, and being a little too concerned with being part of the "royal brotherhood of doctors," vs. working for the patient.

Don't forget the doctors from non-US schools have to pass the same exams as US trained doctors.

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tommyheadleycox
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Re: Losing confidence in doc, what to do

Post by tommyheadleycox » Wed May 06, 2015 4:43 pm

Greetings, Fellow Sleep Questers,

Today I bought a brand new Resmed Airsense 10 autoset machine. I will be letting y'all know how it works for me. Thanks again to everyone who replied a while back.

Regards,
Tom


PS: I did a <lot> of research and this machine seems to be about as good as I could do. I was astonished at the price: $631.00, complete. (except for mask). I think this is because I told my DME company I would just pay out of pocket, don't involve my health insurance company. I didn't really have a choice if I wanted an APAP machine right away. My Resmed Escape S8 brick still works, and is not yet obsolete so insurance woudn't pay for it for another year.

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Jay Aitchsee
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Re: Losing confidence in doc, what to do

Post by Jay Aitchsee » Wed May 06, 2015 5:34 pm

Good job Tommy,

Now you need the software (ResScan and/or Sleepyhead).

You can get ResScan by going here. You must register. Follow the instructions and a link will be sent by email.

See Archangle's (right above) Useful Links for SleepyHead

BTW, I fired 4 sleep docs before finding a keeper.

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