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10 Years of Absolute Misery
#11
RE: 10 Years of Absolute Misery
(12-12-2019, 12:12 AM)SuperSleeper Wrote: Welcome to the forum, SorryIamNormal.   Smile



Folks here can help with CPAP, but I would encourage you to consider the possibility that the issues you mention are not caused by sleep apnea and/or CPAP at all.

I've already spent thousands of dollars.  There isn't anything else to test.  I've already been to two different 400/hr doctors.  And had sophisticated tests no one has heard of.  I was far better off before cpap, this is undisputed empircal fact.  It's not normal to go from 8hrs of sleep (my entire life) to 10hrs.  Why?  Sleep quality is extremely poor. 

Please read Dr. Park's book.  Sleep apnea is Cranio-Facial problem (this is directly from the Dr).  MMA surgery checks multiple boxes for me TMJ, occlusion (bite), and apnea.   

Finding a dr who will listen in my experience is impossible.  If the 'data' doesn't already suggest an issue, then no issue exists.  It's considered axiomatic that their theories, algorithms (human and machine) are infallible and perfect.  Can't stress enough to read Park's book or his blog.  You can drive a truck through their theory.   

Finding a DME on Medicare who will listen to you, is again impossible.  Well I can really only attest to 1 of the 2 DME choices those get on Medicare.  Before I had Hopkins Pharmaquip and they were great!  AFter the Affordable Care Act anyone on Medicare (who was not renting their machine) was forced to switch to Apria or Lincare.  Both are horrible.  I have Lincare.  They refuse to change my mask unless I am 'fitted'.  No doubt so they can charge the insurance. 

The last time I was there, I had to drive 25 miles only to have a tech or RT open the door hand me a sheet to sign and a bag with a mask in it.  No fitting was done.  I'm sure they billed the insurance.  They are lying scam artists.  You can go onto the OIG (Office of Inspector General) and submit a complaint.  Except it says basically don't expect us to follow up we get too many complaints.  I'm sure Lincare knows this.  Walk into their office it looks like a Boiler Room.  They use typewriters for gods sake!  They've also locked my account multiple times due to billing errors on their part and would not allow me to order through the cpap supply center.  So I just gave up. 

All I wanna know is if my cpap data shows anything that I can either work on myself or bring up with the dr.  It's better than sitting here doing nothing.
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#12
RE: 10 Years of Absolute Misery
(12-12-2019, 12:34 AM)SorryIamNormal Wrote:
(12-12-2019, 12:12 AM)SuperSleeper Wrote: Welcome to the forum, SorryIamNormal.   Smile



Folks here can help with CPAP, but I would encourage you to consider the possibility that the issues you mention are not caused by sleep apnea and/or CPAP at all.

I've already spent thousands of dollars.  There isn't anything else to test.  I've already been to two different 400/hr doctors.  And had sophisticated tests no one has heard of.  I was far better off before cpap, this is undisputed empircal fact.  It's not normal to go from 8hrs of sleep (my entire life) to 10hrs.  Why?  Sleep quality is extremely poor. 

Please read Dr. Park's book.  Sleep apnea is Cranio-Facial problem (this is directly from the Dr).  MMA surgery checks multiple boxes for me TMJ, occlusion (bite), and apnea.   

Finding a dr who will listen in my experience is impossible.  If the 'data' doesn't already suggest an issue, then no issue exists.  It's considered axiomatic that their theories, algorithms (human and machine) are infallible and perfect.  Can't stress enough to read Park's book or his blog.  You can drive a truck through their theory.   

Finding a DME on Medicare who will listen to you, is again impossible.  Well I can really only attest to 1 of the 2 DME choices those get on Medicare.  Before I had Hopkins Pharmaquip and they were great!  AFter the Affordable Care Act anyone on Medicare (who was not renting their machine) was forced to switch to Apria or Lincare.  Both are horrible.  I have Lincare.  They refuse to change my mask unless I am 'fitted'.  No doubt so they can charge the insurance. 

The last time I was there, I had to drive 25 miles only to have a tech or RT open the door hand me a sheet to sign and a bag with a mask in it.  No fitting was done.  I'm sure they billed the insurance.  They are lying scam artists.  You can go onto the OIG (Office of Inspector General) and submit a complaint.  Except it says basically don't expect us to follow up we get too many complaints.  I'm sure Lincare knows this.  Walk into their office it looks like a Boiler Room.  They use typewriters for gods sake!  They've also locked my account multiple times due to billing errors on their part and would not allow me to order through the cpap supply center.  So I just gave up. 

All I wanna know is if my cpap data shows anything that I can either work on myself or bring up with the dr.  It's better than sitting here doing nothing.
I definitely understand your frustration. This medical condition is treated by numbers not how you feel. I found that out the hard way.

What the experts here need in order to possibly help you is a screenshot of the “daily” charts. In this order.

Events
Flow Rate
Pressure (not mask pressure)
Leak Rate 
Flow Limitations 
Snore

Those metrics will tell the experts in here what’s going on. If indeed the problem is CPAP and settings that aren’t right for you, they most likely will be able to help you

I too had great numbers but felt like hell. The experts in here do a great job zeroing in on your specific problem and correcting it. It won’t happen overnight but it will happen if your problem is sleep apnea and/or the settings on your machine. But first they need that data to even begin to give you an educated answer. I hope you find answers.
Download OSCAR <——— Click
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#13
RE: 10 Years of Absolute Misery
SorryIamNormal,
Just looking at your chart you posted yesterday. It appears your apnea is well treated at least according to what the medical profession perceives to be treated. The problem being is that they don’t acknowledge how you feel or if your getting a decent nights sleep.

What I see is “fragmented sleep.”  I know you are having mask issues, and that is by far the hardest part of therapy.  Try to persevere with finding a mask that fits.  

I’m not sure why you are using a straight pressure, but if you would set it to Auto Mode, 14 min and 14 max (for now), we would be able to see if your experiencing flow limitations.  That could affect your sleep too.

I also tend to agree with others that your problems don’t appear to be caused by bad cpap therapy, but possibly due to some of your other medical issues.  And be aware that some medications can cause sleep disruptions.  But for now, concentrate on your mask.  There are places to try other masks for a decent price like EBay or Amazon, etc.

Best of luck to you.  Smile

YOUR CHART:
[attachment=17940]
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#14
RE: 10 Years of Absolute Misery
I recently replied in your other thread concerning setting up the Philips System One Auto SV Advanced that that is the wrong machine http://www.apneaboard.com/forums/Thread-...System-One If you can obtain an appropriate machine as I suggested in that thread, then I will be glad to help get it setup.

Meanwhile, on your charts in this thread, the monthly calendar obscures all the useful respiratory data. You can minimize that calendar by clicking the triangle in the date-line. The pie chart is also not very useful. You can turn it off by going to File/Preference/Appearance Tab and turning off the checkmark by show Pie Chart.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#15
RE: 10 Years of Absolute Misery
There is 1 important metric that’s missing in your charts. Flow limitations needs to be added. The problem may be there
Download OSCAR <——— Click
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#16
RE: 10 Years of Absolute Misery
(12-12-2019, 09:43 AM)Osiris357 Wrote: There is 1 important metric that’s missing in your charts. Flow limitations needs to be added. The problem may be there

Yep, see my suggestion above. FL won’t show in Cpap mode on that machine.
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#17
RE: 10 Years of Absolute Misery
(12-12-2019, 09:58 AM)OpalRose Wrote:
(12-12-2019, 09:43 AM)Osiris357 Wrote: There is 1 important metric that’s missing in your charts. Flow limitations needs to be added. The problem may be there

Yep, see my suggestion above.  FL won’t show in Cpap mode on that machine.

Oh ok, good to know, thanks
Download OSCAR <——— Click
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#18
RE: 10 Years of Absolute Misery
I can imagine that you feel like you are getting hit from all sides with everyone telling you to do this or that. The people here that really know their stuff, while not doctors, are light years ahead in terms of making machine adjustments. This may or may not solve your issues. Even though I've been on CPAP for years, I consider myself to be the village idiot in comparison.

The first thing is to follow what OpalRose said about setting your APAP to Auto 14Min and 14Max to see if you are getting a lot of limited air flow that is constantly waking you up, even if you are not aware of it. While this is a way over simplification, if you don't sleep, you don't get sleep apnea. I could stay awake all night and have great numbers and be a vegetable the next day.

The best average I ever got on my AHI, before last month with my ASV, was 2.5. Over the years I have bought a lot of bed pillows, seems for me that head angle plays a part in reducing events, I wear a cervical collar, and in the past I used elastic straps instead of headgear because they worked better at sealing. There is no doctor that will endorse any of that. Maybe 14 is a pressure you can't tolerate, I don't know, but for me it has and always will be about how I feel and not just the numbers. Heck, I was running over 5 AHI after 10 years and didn't even know it. If it is sleep apnea, the people here can help. If it way more complex, that is something else. I have a big buck machine that gives me great numbers all the time, but FOR ME, without the collar and using the right bed pillows, I feel worse the next day.

John
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#19
RE: 10 Years of Absolute Misery
I can't even image what going through something like this for 10 years would be like.

I do agree with what you say about the medical industry. They just look at data and see what values are off and try and fix the values...
What really gets to me is the absurdity of how slow the process is and how many ppl have to suffer because of it. I'm sure they will find out what is wrong with you
eventually but that it takes years to do and so much wasted money (You are paying for mistakes your doctor is making, would be fun if a auto-shop worked the same way).

That's is why I came to this forum to look for help from others with similar issues, get some ideas of what might be wrong and then test out the ideas.
Trying to take my health into my own hands, even if it's difficult because the equipment you might not need is kinda out of your reach many times.
But coming to this forum have most likely saved me another 3-4 months of agony waiting for insurance companies and DME to come through.
Getting the right settings for the machine e.t.c. I still don't even know if I have the right prescription because my doctor forgot to add humidifier too mine.

I think you are definitely in the right place, I think some of the experts here will be able to give you some good ideas of what is going on that you can look into.
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#20
RE: 10 Years of Absolute Misery
I believe that the primary advantage of participating here is that we put quality back into treatment and sleep.

after over 30 years of cpap experience I am finally my own advocate, striving for better health.
DaveL
compliant for 35 years /// Still trying!

I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

http://www.apneaboard.com/wiki/index.php..._The_Guide

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