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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Rob K
 
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New to the forum. Looking for answers.

Postby Rob K on Sun Feb 05, 2017 7:59 pm

Wanted to say Hi and look forward to solving some of my sleep problems. Hopefully I can also be of help to people in the future.

A little history of my apnea. Started feeling bad about 4 years ago. Very rarely had dreams, tired and run down all the time. Wake up feeling bad with headaches and all over body aches; almost flu like. Waking up many times through the night. Laying awake for many hours due to insomnia. It seemed to progressively get worse over the course of a year until I couldn't take it anymore. The sleep deprivation was killing me. After many doctors visits complaining about how I ache so badly that I can't sleep they finally sent me to have a sleep study. Turned out I had mild apnea. They also diagnosed me with fibromyalgia and post lymes disease syndrome among several other things. My aches and pains get better with the more sleep I get. I actually feel real good the couple times a year when I can actually sleep for about 12 hours or so. I'm pretty certain all my problems are related to sleep deprivation.

Started cpap therapy in May of 2014 and have used the machine most every night since. I have mostly solved the insomnia problem by eliminating stress, but still feel sleep deprived and bad every day. Occasional morning headaches, run down, tired all the time, many aches and pains still. Basically not much has changed since I started cpap. Most nights I'm sleeping 7-8 hours. Most nights I wake 6-8 times per night that I know of. Probably waking more that I don't know about. A rare good night will be 2-4 times and occasionally I have some awful nights where I consciously wake 10-12 times. All for unknown reasons.

Minor adjustments in pressure to my cpap did not make any difference. I was in the average 2-4AHI range most of the time so they told me everything is good each time I attempted to get help. I was prescribed sleeping pills several times by my general doctor to knock me out through the night. This seems to make my apnea worse so I don't take them. I finally I reached a dead end with my sleep doctor. He said I have anxiety.lol I never went back to see him after that. Since then I have not heard good things about him.

Went to Mayo for a second opinion and a second sleep study. They said everything looks good. They sent me back to my local sleep center and said to have them set the pressure to 5 instead of 8 where it had been. And if I cannot tolerate that to go without the machine. So I got nowhere going to Mayo and I'm still in the same boat.

I have just touched on all the the doctors visits, tests and programs I've been through over the last 3 years. Many thousands of dollars later and very little relief. Anyone I talk to about it is dumbfounded. Basically my faith in the medical system is very low at this point. It's amazing how screwed up it is in the way it operates(services and financials). I've found out first hand why so many people continue to suffer.

I took a break from doctors visits this year and decided to take the matter into my own hands. Since I believe that most of my problems still stem from sleep deprivation this is where I'll be focusing my efforts. Did a ton of reading this past year.

I recently bought a Withings Aura sleep monitor that tracks how often I wake every night. It's not highly accurate, but from the graphs it's pretty obvious that I'm aroused from sleep often and likely many times that I'm not aware of. The arousals/awakenings seem to correspond with the apneas and hyponias that I'm still having.

Thanks to the internet I was able to find out how to adjust my Remstar S1 Auto by myself. Now I can start tweaking the settings. I also found software called Sleepyhead that shows me all the graphical data that before I could only get by going to the sleep center. Also this week I found this forum and decided to sign up.

4 years of sleep deprivation and hoping to still figure this out. I haven't completely given up. Have gone through some rough patches though. Sorry to be so long winded to start with. It's been a long road.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Sat Feb 25, 2017 12:36 am, edited 1 time in total.

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kteague
 
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Re: New to the forum. Looking for answers.

Postby kteague on Sun Feb 05, 2017 10:29 pm

Yes, it can be a long frustrating journey when those we need to help us are not helpful. Been there. Sounds like you are headed in the right direction toward finding solutions on your own and with the help of other CPAP users. First of all, evaluating the details of your nightly machine data is in my opinion your first priority. It may contain clues that are helpful. And it would be a shame to start chasing down rabbit trails if the answers are already there. Along with Sleepyhead data, it might help for you to post copies of your sleep study reports and see if anything stands out. Was there any mention in your reports of limb movements?

There are some general things to consider when sleep is poor, like are there any medications you are on that may be known to cause sleep disruption? Once you determine that your CPAP treatment is indeed therapeutic, you can start the process of ruling out other contributors.

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Sun Feb 05, 2017 11:00 pm

I'm pretty certain limb movements were not a problem. I'll have to double check that.

I'm not overweight. 5'11" 170lbs. Had appendicitis this spring and lost 10-15lbs. I was down to about 155-160lbs and very thin. This did not seem to change my apnea at all based on the cpap data. I have lost muscle tone since I am so run down all the time and not as active as I used to be. 5 years ago I was extremely fit, but now I don't work out anymore. I do maintenance on rental property and still get plenty of exercise that way. I struggle through every work day and go home and lay down because I'm so exhausted. I'm pretty dysfunctional by the time the weekend comes.

Also I don't take any meds. Had many doctors diagnose me with quite a few different things that I won't go into. Doctors had me on fibromyalgia drugs and antidepressants for a while, but they made me terribly ill, enough so that I was bed ridden. A lot of scary symptoms from those drugs so I refuse to take them now. Plus I firmly believe they are misdiagnosing me. Since I stopped taking the drugs I've been doing better just focusing on getting more sleep. If I sleep 12 hours I feel like a normal person. It's rare that I can sleep that much though. 4-6 hours of sleep I feel horrible, around 7-8 hours and I feel bad, 9-10 and I'm decent, 11-12 or more and I'm ready to take on the world. The doctors answer to my waking up through the night has been sleeping pills. I don't take those either since they tend to make my apnea worse.

I have 0 to 2 sodas a week. That's the only caffeine I do and it's only because I have a heck of a time making it through the work day sometimes. Fortunately my employers are good friends and have allowed me to take many days off to get through this.

Not sure what to post for sleep study data. Seems to me there were many pages of information.

Can you point me toward a thread that explains how to post my Sleepyhead cpap data? I'm assuming everyone is going to want to see it.

Also set my cpap to auto mode last night so that the machine would make the adjustments that it needed. Set the low level to 5 which is what I need for easy breathing. 4 is not quite enough with the Airfit N10. Set the upper limit to 12. The pressure ranged from 5 to about 10.5 last night. Maybe I'm getting ahead of what I should be doing at this point.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

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OkyDoky
 
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Re: New to the forum. Looking for answers.

Postby OkyDoky on Mon Feb 06, 2017 9:19 am

This link will show you how to organize, take a screen shot, and post your SleepyHead data. There are 3 pages, so click on the link at the bottom of the page to go to the next one.
https://sleep.tnet.com/resources/sleepyhead/shorganize
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Mon Feb 06, 2017 11:22 pm

Lets see if I got these links to my Sleepyhead screenshots right. Hopefully I have some useful data posted. No Flow Limit graph available for my Remstar S1 Auto.

Click on the thumbnail to see the full image.
Image

Image

Image

Image

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

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OkyDoky
 
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Re: New to the forum. Looking for answers.

Postby OkyDoky on Mon Feb 06, 2017 11:43 pm

Your reports work fine. You still have a bit of snores, obstructions and hypopneas that could probably be lowered by increasing your minimum pressure to 6 and turning the ramp off. There's not much difference between the ramp at 5 and starting at 6. For now the maximum pressure of 12 seems to be doing the job since you haven't needed it that high.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Tue Feb 07, 2017 12:23 am

Adjusted to minimum of 6 and high of 12 and we'll see how it goes.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

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OkyDoky
 
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Re: New to the forum. Looking for answers.

Postby OkyDoky on Tue Feb 07, 2017 12:26 am

Rob K wrote:Adjusted to minimum of 6 and high of 12 and we'll see how it goes.
Monitor for a few days and let us know how it goes. You may need to go up just a small amount more on the minimum but see how this goes first. Do you have any problem breathing at the low pressure? Some do and some don't.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

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palerider
 
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Re: New to the forum. Looking for answers.

Postby palerider on Tue Feb 07, 2017 12:41 am

I'd have said 8... but working up is fine :)

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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: S9 Vpap Auto
come hang out on IRC and chat: irc.freenode.net, ##cpaptalk
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Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Tue Feb 07, 2017 12:43 am

Breathing is borderline with pressure of 5 through my Airfit N10 mask. Can breath good at pressure of 6. You can see I started tweaking the pressure settings recently from 5 where they had it set. Everything before that was adjusted by the sleep center. Thanks so much for the help.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Tue Feb 07, 2017 12:49 am, edited 1 time in total.

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OkyDoky
 
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Re: New to the forum. Looking for answers.

Postby OkyDoky on Tue Feb 07, 2017 12:48 am

palerider wrote:I'd have said 8... but working up is fine :)

I was thinking along those lines but he did spend quite a bit of time around 6 to 7 the last half of the night. So as long as breathing at the low pressures is not a problem decided to start just a little higher and go slow.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

Rob K
 
Posts: 130
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Gender: Male

Re: New to the forum. Looking for answers.

Postby Rob K on Tue Feb 07, 2017 12:50 am

Here is an image of my Sleepyhead flags next to the sleep chart for my Withings Aura sleep monitor. I picked the night that best reflects what is happening as I sleep. I'm still working with Withings to try and get everything adjusted properly to reflect the most accurate data. It still is not indicating all the times I wake up. It only flags about 2/3rds of my wake up events. Several of the wake ups are being documented as rem or light sleep.

As you can see my night is very disturb. As is every night. Like I said I fully awake 2-4 times per night on a good night, 6-8 times on a typical night and around 10-12 times on a bad night. Seeing the graph from the Aura helped me to realize that my OA, H, and RE events are still arousing me from sleep even with the cpap. That's why I don't feel any different when I go without it for a week. Always very tired.

For the last few years I could not figure out why I wake so often and so tired all the time even with the cpap. Two different sleep studies at two different places and they both said the cpap is doing what it is supposed to do. That was all the answers they had for me. Glad to be here on the forum, because I get the feeling some of the people here know more than the doctors on how to treat apnea.

I lined up the two charts the best I could. It at least shows how my breathing events are affecting my sleep pretty severely still. I'm not getting enough restorative deep sleep and that is likely why my body aches so severely. Most of the aches go away when I sleep for 12 hours. Over the last several years if I allow myself to take a nap I'm usually out for 3-4 hours which tells me I'm definitely sleep deprived. And that's on top of the 8 hours I got during the night. That usually gets me around 12 hours and I feel pretty darn good at that point. Wish it would happen every night with just 8 hours.

Click on image for a larger view.

Orange=awake
Light blue=REM
Medium Blue=Light sleep
Dark blue=Deep sleep
Image

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Tue Feb 07, 2017 9:36 pm, edited 7 times in total.

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OkyDoky
 
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Re: New to the forum. Looking for answers.

Postby OkyDoky on Tue Feb 07, 2017 1:00 am

Since you are having a lot of wake ups go ahead and raise the minimum to 8 like Pale Rider was thinking. It may get you to better sleep quicker. Now there are a lot of reasons for body aches and CPAP might not get rid of those.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

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palerider
 
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Re: New to the forum. Looking for answers.

Postby palerider on Tue Feb 07, 2017 1:23 am

OkyDoky wrote:
palerider wrote:I'd have said 8... but working up is fine :)

I was thinking along those lines but he did spend quite a bit of time around 6 to 7 the last half of the night. So as long as breathing at the low pressures is not a problem decided to start just a little higher and go slow.


I tend to recommend higher pressures with the respironics because they're so slow to respond, they sometimes let a lot of apenas go by, without responding, or responding promptly enough to avoid having higher AHIs.

that said, the AHI isn't that bad, but it could be better.... and like you said later, it might result in better sleep.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: S9 Vpap Auto
come hang out on IRC and chat: irc.freenode.net, ##cpaptalk
https://sleep.tnet.com/resources/sleepyhead
Don't confuse my personality with my attitude. My personality is who I am. My attitude depends on who YOU are.

Rob K
 
Posts: 130
Joined: Sun Feb 05, 2017 5:22 pm
Gender: Male

Re: New to the forum. Looking for answers.

Postby Rob K on Tue Feb 07, 2017 1:28 am

Getting a lot of sleep does mostly eliminate my aches. Like I said if I can sleep for 12 hours or more I'm feel real good and ready to take on the world. My aches and pains are pretty much gone if I can get a lot of sleep. I do go through stretches where it's like having the flu every day. If I get like 6 hours of sleep or less for a few days in a row than it is pretty horrible. In my case it is directly relative to how well rested I am. It's pretty obvious that my body has not been getting restorative deep sleep for several years now. All sorts of health problems have popped up. I'm pretty certain a lot will resolve itself once I can sleep well. I have hope at least.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

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