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[Symptoms] 18 months and still no solution
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Brian Schulz Offline

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Machine: Res Med S9 Elite
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Post: #1
Angry 18 months and still no solution
It has now been 18 months since I sought help for feeling lousy during the day and unable to concentrate. I have had 3 sleep studys, 3 different CPAP machines two different sleep specialists (at the same clinic) The last machine was ResMed 9 with P10 nasal pillow but no luck. My sleep test AHI 65/hr supine, 44/hr REM & nadir saturation at 74%. I could not get used to the machines and still had headaches in morning and lousy during the day. I now have a SomnoDent dental sleep apnoea appliance and most nights sleep 7 hours with device and no headaches in the morning but still have this lousy head the next day like when you have a bad head cold or the feeling you get with a hangover and this was the issue that led me to seek help in the first place and I cannot find any of my friends with sleep apnoea who have this symptom and this is what I want solved as on a bad day I cannot function, cannot concentrate. On a good day I can do 30 difficult Sudoku in 30 minutes during breakfast, on a bad day I cannot finish one. Is this symptom really sleep apnoea or some other problem. I have had a million tests - brain scan etc and now my Physician said it is an anxiety issue but my sleep specialist continues to blame sleep apnoea but I cannot find anyone to support this. My regular GP, who also suffers with mild sleep apnoea, said I have given it a good shot and if the dental device gives me a good sleep and minimum headaches there must be another answer
04-24-2014 11:39 PM
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retired_guy Offline

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Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
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CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

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Post: #2
RE: 18 months and still no solution
You've had 3 sleep studies, and according to the numbers you posted you have sleep apnea. So that doesn't seem to me to be something you need to debate further. What is needed is to find out the appropriate machine and regimen to address the issue. It sounds like the dental device may be of help, but you wouldn't be writing in if it was all that great. So back to the basics: Sadly, your S9 will not give you, or us, the stats that would be of much help to determine what your pressures should be, what your leak rates are, and so forth. So you need the sleep clinic people to help you do that, or better yet you need to get a data capable machine so you can help yourself.

You mentioned "The last machine was a REsMed 9 with P10 nasal pillow but no luck." What does that mean exactly? How long did you use the machine with the P10 mask? Was the mask sealing well? Were you unknowingly "mouth breathing?" Pressure of 10 sounds a bit low to me, but what did your original prescription call for?

Do not despair, there is hope! But what can be your first step? Can you purchase a data capable machine such as the ResMed 9 Autoset? Or pick up one used? Or beg or borrow one from your sleep DME people?

Can you make an appointment for titration with your sleep people?

Stay focused on solving the apnea for awhile. It sounds like nothing else is working, so you just as well do that, don't you think? And stay close to this forum and the rocket scientists we keep around here will help you get through this.
04-24-2014 11:52 PM
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robysue Online
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Machine: PR Dreamstation BiPAP Auto
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Post: #3
RE: 18 months and still no solution
(04-24-2014 11:39 PM)Brian Schulz Wrote:  I now have a SomnoDent dental sleep apnoea appliance and most nights sleep 7 hours with device ...
My regular GP, who also suffers with mild sleep apnoea, said I have given it a good shot and if the dental device gives me a good sleep and minimum headaches there must be another answer
Have you had a sleep test while using the SomnoDent??

It is a reasonable suggestion to make to your GP: See if he is willing to send you for a sleep test with the SomnoDent in place.

If the SomnoDent is doing a decent job of addressing the apneas, it's time to look for a different cause for the headaches.

If the AHI is still way too high with the SomnoDent in place, then it's reasonable to think that the undertreated OSA is still a major factor in causing the headaches.
04-25-2014 12:01 AM
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robysue Online
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Posts: 1,220
Joined: Oct 2013

Machine: PR Dreamstation BiPAP Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: PR Dreamstation humidfier
CPAP Pressure: min EPAP = 4; max IPAP = 9;
CPAP Software: SleepyHead EncoreBasic EncorePro

Other Comments: Papping since September 2010

Sex: Female
Location: Buffalo, NY

Post: #4
RE: 18 months and still no solution
(04-24-2014 11:52 PM)retired_guy Wrote:  So back to the basics: Sadly, your S9 will not give you, or us, the stats that would be of much help to determine what your pressures should be, what your leak rates are, and so forth. So you need the sleep clinic people to help you do that, or better yet you need to get a data capable machine so you can help yourself.
Brian Schulz lists his equipment as a Resmed S9 Elite which is a full efficacy data fixed pressure machine.

While it doesn't have an Auto mode, it does record full leak data, so we can tell whether the leaks are under control. And it does record full AHI data so we know exactly when the events occur and what kind of events they are.

It's just that there's no autotitration feature.


Quote:Can you purchase a data capable machine such as the ResMed 9 Autoset? Or pick up one used? Or beg or borrow one from your sleep DME people?
The OP already has a data capable machine if he's got the right machine in his signature.
04-25-2014 12:06 AM
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retired_guy Offline

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Posts: 2,744
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Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #5
RE: 18 months and still no solution
(04-25-2014 12:06 AM)robysue Wrote:  Brian Schulz lists his equipment as a Resmed S9 Elite which is a full efficacy data fixed pressure machine.

While it doesn't have an Auto mode, it does record full leak data, so we can tell whether the leaks are under control. And it does record full AHI data so we know exactly when the events occur and what kind of events they are.

It's just that there's no autotitration feature.


Quote:Can you purchase a data capable machine such as the ResMed 9 Autoset? Or pick up one used? Or beg or borrow one from your sleep DME people?
The OP already has a data capable machine if he's got the right machine in his signature.

Thanks. I misread which machine he had. So Brian, can you download the Sleepyhead software, go back on the machine for a night or so, and see what the reports tell you?
04-25-2014 12:28 AM
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bwexler Offline

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Machine: PRS 1 BiPAP autoSV Advanced, with Heated Tube humidifier
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Post: #6
RE: 18 months and still no solution
I suspect you have multiple problems.
The sleep apnea has been diagnosed, but you are having problems with the treatment. Alittle more detail about how and why your xpap machines did not work would help. Were you complient but got no relief or did you take the mask off every night in less then 4 hours, or did neglect to put the mask on.

Have you had blood work checked? Especialy magnesium levels and vitamin D levels, if low could allow for the headaches.

Goog luck.
04-25-2014 12:33 AM
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zonk Offline

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Post: #7
RE: 18 months and still no solution
(04-24-2014 11:39 PM)Brian Schulz Wrote:  I could not get used to the machines and still had headaches in morning and lousy during the day.
The common cause of headache while on PAP
Massive leaks that causes the therapy to be ineffective
Pressure is not optimal, in this case auto-PAP can helps as it adjust pressure breath-by-breath during the night
Too many apnea/hyponea events and longer in duration
Oxygen levels drops during the night, wearing an oximeter during the night is good idea
Attitude and the desire to make CPAP works is important factor to successful treatment

You wrote here http://www.apneaboard.com/forums/Thread-...g-next-day
[I check the readout on my ResMed CPAP machine every morning and take the CD card to my Specialist every month who prints out the report]

and [My Specialist has increased the pressure from 8 to 10 and now 11]

But you did not say what leak and AHI (AI, central AI) readouts

As for the software, you can download and see for yourself
ResScan and SleepyHead download http://www.apneaboard.com/forums/Forum-Private-Files-and-Links
(This post was last modified: 04-25-2014 07:01 PM by zonk.)
04-25-2014 06:20 PM
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Brian Schulz Offline

Members

Posts: 10
Joined: Mar 2014

Machine: Res Med S9 Elite
Mask Type: Nasal mask
Mask Make & Model: F & P
Humidifier: Res Med
CPAP Pressure: 10
CPAP Software: ResScan

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Post: #8
RE: 18 months and still no solution
(04-25-2014 12:01 AM)robysue Wrote:  
(04-24-2014 11:39 PM)Brian Schulz Wrote:  I now have a SomnoDent dental sleep apnoea appliance and most nights sleep 7 hours with device ...
My regular GP, who also suffers with mild sleep apnoea, said I have given it a good shot and if the dental device gives me a good sleep and minimum headaches there must be another answer
Have you had a sleep test while using the SomnoDent??

It is a reasonable suggestion to make to your GP: See if he is willing to send you for a sleep test with the SomnoDent in place.

If the SomnoDent is doing a decent job of addressing the apneas, it's time to look for a different cause for the headaches.

If the AHI is still way too high with the SomnoDent in place, then it's reasonable to think that the undertreated OSA is still a major factor in causing the headaches.
04-27-2014 06:24 PM
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Brian Schulz Offline

Members

Posts: 10
Joined: Mar 2014

Machine: Res Med S9 Elite
Mask Type: Nasal mask
Mask Make & Model: F & P
Humidifier: Res Med
CPAP Pressure: 10
CPAP Software: ResScan

Other Comments:

Sex: Male
Location:

Post: #9
RE: 18 months and still no solution
18 months after seeking help I am back at the starting point. I first sought help because I would develop this lousy congested head like a bad head cold, a hangover feeling like in a vice and unable to concentrate or co-ordinate and I could not function especially in the morning and if I taxed my brain concentrating it would get worse. I would get some short term relief by placing a cold wet towel on my head especially my forehead. We had all sorts of tests including a brain scan and engaging a Psychologist, a Physician and even a dietitian. Whilst undergoing all these tests and visits I also started waking up with headaches. We eventually had a sleep test, three in fact, and I was diagnosed with OSA. Obviously if you have followed my blog you will have seen I have given it my best shot and my GP has said I have really given it everything. I might point out my first Sleep Specialist said after 7 months as my specialist that CPAP does not work for everyone and the tennis balls on my back might be my best option. My new sleep specialist wanted to persevere with CPAP but she was failing to address the leakage problems that we could not overcome being a mouth breather. Over the years we have tried to overcome this issue with my sinus bored out and my nose broken and straightened wearing splints in my nose. Finally after my GP suggested that maybe the Somnomed dental appliance supported by the tennis balls may be the answer after I told him a friend could not cope with CPAP after years of trying and went to the dental appliance about a year ago and said he now feels 20 years younger and no problems. At 72 I would take 10. We convinced my specialist to support it which she reluctantly did and I will request a sleep study at my next appointment 9 May. I see my GP the day before 8 May and again 20 May to see how I went. At least he is interested. During the 15 months with CPAP I averaged less than 4 hours 90% of the time and still had the headache, with the dental device I am averaging close to 7 hours and no headache but I still some days have the same symptoms that I sought help for 18 months ago.
Brian
04-27-2014 07:00 PM
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Brian Schulz Offline

Members

Posts: 10
Joined: Mar 2014

Machine: Res Med S9 Elite
Mask Type: Nasal mask
Mask Make & Model: F & P
Humidifier: Res Med
CPAP Pressure: 10
CPAP Software: ResScan

Other Comments:

Sex: Male
Location:

Post: #10
RE: 18 months and still no solution
(04-25-2014 12:33 AM)bwexler Wrote:  I suspect you have multiple problems.
The sleep apnea has been diagnosed, but you are having problems with the treatment. Alittle more detail about how and why your xpap machines did not work would help. Were you complient but got no relief or did you take the mask off every night in less then 4 hours, or did neglect to put the mask on.

Have you had blood work checked? Especialy magnesium levels and vitamin D levels, if low could allow for the headaches.

Goog luck.
I tortured myself for more than 12 months. I gave it a good shot with my first sleep Specialist Dr Nankervis using the CPAP F & P machine with no result due to the inability to stop the leakage so we settled on the tennis balls in the shirt. I went to Europe for a month and only took the tennis balls and no CPAP and it was probably the best month I have had until I started on the Somnodent dental device. When I returned I had a new specialist who was determined that I continue with CPAP. First the F & P at 8, then an F & P auto from 4 - 18 and then the ResMed S9 Elite first at 9, then 10 and finally 11. For 6 months I tried the machines almost every night except when I had a bad cold. As I told my new specialist I have done exactly what you have asked, I have tortured myself for no result and you will not accept that I have no control of the leakage and with the straps to hold the mask in place I look like a deep sea diver. During this time I had two more sleep tests to get the various settings. I have not been able to find anyone on this forum, the CPAP one and Sleep Advantage or any of my friends with sleep apnoea with the symptoms that cause me the most problems and the ones that I first sought help for and on my visit to my GP the day before I see my Specialist we will be discussing those issues. I can wake up in the morning feeling OK with no headache with the dental device and tennis balls but then develop the symptoms I have referred to. My head is not clear, like a bad cold or a hangover or in a vice and the more I use my brain or try to concentrate the worse the head becomes. If I wet a hand towel with cold water and place on my head especially the forehead I get some temporary relief but I have had to give up playing in golf competitions on Monday and Wednesday as they start at 8 am when my head is starting to feel lousy. In fact I was playing so bad, my handicap was 16 which is OK for someone who is 72, my partners said to go and get it fixed because you are not helping yourself at the moment. That was 15 months ago. I am not one of those with the equipment in the cupboard but if I cannot find a solution they might bury me with the machines.

Brian
04-27-2014 10:05 PM
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