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Frustrated [Not getting enough sleep]

March 14, 2018, 10:53 am
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Hello, 

I am new to the forum. And, I love it!  like

Last year 2016 I received a call from my 1st cousin in Chicago. He called to remind me that it was the 60th birthday. Two weeks later his wife found him dead. He had a heart attack. He had not been using his CPAP consistently.

This was the first time I'd ever even heard of a CPAP machine. It turns out that several of his fraternity brothers were using CPAP machines and told me that I should get tested. 

After returning to Michigan I schedule a test and it turns out that I averaged 16.4 incidents per hour!!!

So, I was immediately prescribed CPAP therapy. Unfortunately, after 3 months on CPAP I was unable to exhale whenever the machine "ramped up". So, I had an additional test and was prescribed BIPAP which, I was able to wear without issue.

The problem that I have had since childhood is that I have never been able to sleep more than 4 to 6 hours at night. Which means that I have only scored a maximum of 80 points at the highest on the myAir web dashboard.

What is the lowest acceptable score, compliance or hours allowable? Huh

Any response is greatly appreciated.

Thank you,

Brian Jefferies
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Help Please w/Aircurve 10 VAuto/Sleep Issues

March 15, 2018, 9:36 am
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Hi - Still trying to improve my Sleep and use of the Aircurve 10 VAuto.  Below are a couple of recent nights. I included the AHI numbers throughout the night, because they can get pretty high despite a "not too horrible" AHI average.

I go into deep sleep later in the night and have very involved dreams, etc.  Still have trouble falling asleep and don't really achieve that until after 2 or so.  Lots of pain at night and wake up exhausted, and can easily go right back to sleep after breakfast even with about 8 hours of sleep.  Never feel rested.  Used an S9 Autoset for many years until last November and despite many adjustments, etc., still do not feel ok using the Bilevel. I've never really needed pressure settings above 16, and have no lung or heart problems.  Sleep Doctor constantly confused and just goes by the sleep study report that recommended a bilevel based on "Patient may have higher events on her back and may exceed a pressure of 20" which I never have.  So there's the underlying question of whether the Bilevel is best for me - she just keeps saying it should be more "comfortable", and to keep trying to make it work.

So.....just trying to improve things with changing some of the settings.  The IPAP/EPAP range seems ok, if maybe too wide.  PS of 5 that was prescribed was too high, and AHIs decreased when I went down to 2 - haven't tried to go lower.

I saw somewhere that my I:E ratio should be around 1:2.  I did increase the Ti Max to 2.5s but it usually doesn't get above 2.0s. Otherwise the Ti Min, Trigger, and Cycle are the Factory Settings.

I wanted to get any observations from the knowledgeable folks on this forum of things that may be happening or adjustments I could try - my sleep doctor is of no help, and the DME tech knows about 1% of what she should.

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I never used to have so many CAs, and most days they are occurring from 6 a.m. on, but I need to sleep until 8 or 9 to get enough sleep.

Thanks for any assistance you might give me.
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Wondering if I need a smaller mask

March 15, 2018, 12:14 pm
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Because of completely negative experiences with local sleep center, I'm doing this on my own. Selected APAP and mask after lots of reading, guessed at mask size. I'm a very heavy woman so I chose the Large size of the Quattro FX. And it works - delivers appropriate pressure according to the usage chart, doesn't seem to leak, is as comfortable as anything fitting over my whole face is going to be. (Pillows are out, I'm a mouth breather.)

The reason why I am wondering if I should try a Medium is that I have trouble positioning it over my mouth and nose. Either the top is almost reaches the indentation between my eyes, or the bottom is halfway down my chin. The mask I like is fairly expensive so I don't want to just buy another one blindly.  And from what I have read, being "sized" by a professional isn't a guarantee of success even if I had a professional to call on.

Feel free to refer me to informational websites, I've googled of course but googling is only as good as your search terms and the perfect reference might be there but #5,419 on the list. Wink
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What (sleeping) pillow do you like and why?

March 15, 2018, 12:25 pm
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Looking for recommendations on a sleeping pillow. I've always used a down pillow but am having trouble arranging it around my mask, especially since my ear is very sensitive to being mashed between head and pillow. (Left side sleeper.) I've looked at various CPAP pillows on the megawebsite-that-shall-not-be-named (lol) but figured the experienced users here would be a good resource.
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What adjustments do these SH images suggest?

March 15, 2018, 1:09 pm
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I've been using this AirSense 10 Auto for just over three weeks (seems much longer) and have made a couple of minor adjustments (only significant one was to EPR, from 2 to 3) and have to say that my general feeling of well-being isn't up to par. Some freaky-looking parts of my chart concern me though I gather the biggest problem is with leaks.

Looking at this view of last night and the 30-day statistics, what would you recommend?


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Changing DME providers

March 15, 2018, 3:14 pm
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While my wife is starting to go on her CPAP journey, which she is doing well, She and I are transferring our business from our local DME to one over in a metro area, which is much larger than our town. I read so many times in threads about the dissatisfaction with DME providers that I thought I might share my experience, with details, about the transition. I don't know if anyone would like to read about it, so I ask. Would anyone like to hear about what the process is and why I've chosen to change things up? Kindly let me know.
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Just started CPAP but major problems

March 15, 2018, 4:03 pm
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Hi new to the board, unfortunately not new to Sleep Apnea. After a long journey and many sleep studies I was finally diagnosed as Severe with 48 events per hour, at one point in the hospital (not the sleep unit) one nurse timed my not breathing at around 58 seconds at a time and the current sleep study at that time said I was only suffering from moderate sleep apnea  Too-funny

Anyway long story short, got my ResMed 10 Elite machine 3 days ago and was set up on 11kpa.

First night was sort of ok felt fairly tired in the morning after 8 hours sleep, more tired than when I use my TSD AHI around 10.8

2nd night after 8 hours felt much more tired in the morning. AHI around 10.8

3rd night I had to stop using the machine after 1.5 hours as I was experiencing great difficulty in breathing, very hard work to inhale for each breath and each inhalation was taking more than 6 to 7 seconds. When I removed the FF mask I found that my nostrils were very constricted and that it was almost impossible to draw air in thru them. Waited a while, turned the hose heating to off and reduced the humidity then tried again, after another 3 hours woke unable to breathe and removed the mask same problem, have gone back to the TSD for now as at least I wont suffocate in my sleep and die. AHI was around 9.7 after that 4 and a bit hour stint.

I have always had an extremely restrictive sinus and upper airway and have always breathed thru my nose, definitely not a mouth breather. Its genetic, my sister has the same and my mother had many operations to improve breathing in her younger days. When I swam competitively or trained I had to force myself to breathe thru the mouth to get the air I needed.

Where to from here ? any suggestions on how to get the CPAP machine to work for me?
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Airsense 10 problem with DreamWear Mask

March 15, 2018, 5:17 pm
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I am rather new in CPAP treatment (less than a month) and I purchased the Resmed Airsense 10 Auto with a Resmed Swift FX nasal mask. I also started using the SleepyHead software to monitor the treatment. According to the software I had a very good AHI index (less than 3) and I already felt better.

Two weeks later, as I was not feeling so comfortable with the air tube under my nose, I decided to buy the Respironics DreamWear nasal mask which I believe is an ideal mask as regarding the feeling of freedom. BUT from the first day of using that mask, I had major problems that never had with the Swift FX. First of all, the Airsense 10 Auto, was no more able to sense that I was getting the mask off, stopping providing air, so I should always manually turn it off. Additionally, my AHI index reached very high levels (more than 10) and I felt not good again in my sleep. When checking the SleepyHead software, I found out that the Airsense 10 reported faulty OA and CA events, for periods I was not sleeping.

I do not know if anybody else had such problems, but as it seems the combination of Airsense 10 and the DreamWear mask is not working for me. I believe that Airsense can not realize if I am sleeping or not, to correctly adjust the pressure so it does not treat my apnea events as it should.

I need a presure level of 8 for my treatment, so the machine is set to provide 5 to 11. I changed the ramp time from Auto to Off, bypassing the lower levels without improvement. I do not know what is wrong with that set, as I hear that there are people out there using the same set without any problems.

Could anybody suggest any ideas please ?

I attach a report with the DreamWear mask. Notice that from 6:00 to 6:20 and 7:40 to 8:00 I was awake.
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recent problems with sleep disturbance

March 16, 2018, 5:29 am
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Looking for a bit of help/guidance. 

i started using a Resmed Autoset10 last may following self diagnosis. With the data obtained i managed to convince the NHS i have mild sleep apnoea.
i struggled with masks, and eventually came across the new Resmed Airtouch memory foam mask in November, and until mid february have been having good success.
i have struggled over the past 3-4 weeks with increased nighttime wakenings. 
the number average around 7-10 per night - wihch has interrupted my deep sleep periods so i am now feeling rubbish again.


i thought the wakeups was caused through an itchy nose - as i was removing the hose, to get my finger through the mask to itch my nose. 
i then waxed my nose to ensure no stray hairs causing a tickle. 
over the past 2 weeks i've not noticed the tickle, but the sleep tracker i use (Resmed S+) still indicates the 7-10 wakeups per night.

i'm waiting to hear from my NHS sleep clinic for thier view. Last time i saw them i had to wait 4 months to see the consultant. starting to get worried as i am starting to feel tired and fatiqued again, even though my AHI's are low - which i assume is due to the disturbed sleep.

i spoke with a private GP through a phone consultation yesterday - i wanted to know if it was possible to get a mild seditive to keep me in continous sleep throughout the night so i didn;t awake. She suggested nytol short term, but i need to try to see my consultant. i was nervous, as i heard a seditive can make apnoea worse due to relaxed muscle. i tried 1 x 25mg nytol last night and it was worse - so i won't be trying that again. 

i've attached a couple of screen prints for the past 2 nights, along with the data from the Resmed S+. Resmed own statement on awakenings is: On the other hand, if you’re feeling tired during the day, then it’s possible you may have sleep issues related to un-remembered awakenings. You may be experiencing what sleep scientists call “micro-arousals.” Micro-arousals are very short awakenings, lasting less than two seconds. But they often occur many times within a brief period of even five minutes. Micro-arousals can be disruptive to sleep, and are often (but not always) symptoms of larger sleep issues like Restless Leg Syndrome (RLS) and Periodic Limb Movement Disorder(PLMD). Both of these disorders are frequently accompanied by fractured sleep and by many un-remembered awakenings. The likelihood of experiencing RLS and PLMS increases with age. Research indicates that 34 percent of adults in their 60s have some symptoms of PLMS.


any helps, advice or suggestions would be hugely welcome. 


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S.'s Sleepyhead Charts

March 16, 2018, 6:24 am
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Philips asv system one [manual]

March 16, 2018, 7:11 am
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Where can I find the philips respironics clinician setup manuals?
Not older grey model.Model name is philips respironics bipapautoSV advanced system one.
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Philips Dreamstation APAP ramps up but not down

March 16, 2018, 7:24 am
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I have used a CPAP machine for nine years. I just switched to an APAP machine, set to 9-15. The machine ramps up during the night (probably when I roll over on my back) but it never ramps back down.

This morning I rolled over on my side and watched the clock for 1/2 hour. The machine never backed off from 15cmH2O.

Dreamstation design? All APAP machines? My particular machine broke? My machine doesn't recognize my breathing style? Would a Resmed machine be better at ramping down?

I suppose I could get used to it, but my mask sometimes leaks at 15 and it waked me up. I would rather have a machine that ramps back down when I am on my side.

Thanks
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S9 Autoset, RIP

March 16, 2018, 9:01 am
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Hi all. It's been a while since I was active here, but I'm back because I could use some advice and comments, and for that, there is no place like Apnea Board!

Background: My initial sleep study was on 3/23/2012 with a diagnosis of severe sleep apnea. Fortunately it is just ordinary sleep apnea, no unusual stuff, so the doc prescribed a Philips Respironics System One (PRS1) and told the DME to set it to 5-15 cm. I collected it and, because the DME was telling me lies, I returned it a couple weeks later and bought my own PRS1 for $300 on the local Craigslist. About that time I came here and started learning more about sleep apnea and treatment options.

About a year later the PRS1 suddenly wouldn't mount the data card, so I bought a Resmed S9 Autoset from Supplier #2. (Later a friend fixed the PRS1 - a pin was bent deep in the slot, but I liked my new S9 Autoset, so I put the PRS1 on the shelf as a backup.) I used the Resmed S9 Autoset every night since it arrived until just now. About a week ago It made a whining noise when I turned it on, and eventually the whining lasted all night. Now, I have my dumb moments, but I do know what a bearing sounds like when it's about to fail. And sure enough, night before last it wouldn't run and the screen said 'motor defect.'

Since buying the S9 Autoset I signed up for Kaiser Permanente (KP), so when it failed I called them. They said that they did equipment repair and had walk-in hours every day from 8-5. The next day I schlepped the S9 Autoset through 30 miles of screaming city traffic to their sleep center. When I got there they said 'we don't have any technicians in today.' Me: 'Why did they tell me yesterday that they had walk-in hours every day? I drove 30 miles to get here!' This went on for a while and finally I left. When I got home I called the main KP number and made an appointment to speak to a sleep specialist the next day, a ploy to get past the front desk. When I went to see the specialist yesterday morning she said they wouldn't be able to fix my S9 Autoset and that I should throw it away and buy a Dreamstation DX500H11 from them for a $298 co-pay*. I declined the Dreamstation so she gave a PRS1 as a loaner, setting up the card for 8-20cm. 'so we can find out what setting you really need.' Now, I had my S9 Autoset set for 15-20cm. and it averaged about 17cm. all night long, and frequently hit 20cm., so I already know what I need. I offered her the data card from my Resmed, but she didn't want to see it. I'm pretty sure that was because she didn't know how to look at data from anything but Respironics products, because that is all they use. I took the loaner home, although I don't know why - my old PRS1 is on the shelf.

[Update: It is now the morning after. When I went to bed last night I intended to use the loaner, but the sleep specialist at KP had failed to include the wall-to-transformer section of the power cord. I could have used the power cord from my own PRS1, but I decided just to use my old PRS1, although I changed its setting to 8-20cm and inserted the data card from KP.]

On getting home, before saying kaddish for the S9 Autoset, my first attempts were to see if I could find a repair place and how much it would cost to get a new motor for my S9 Autoset. I'm not poor, but why spend money if I don't need to? I could probably install it myself if I could get the motor someplace. I was able to connect to only one repair place online, and they wanted $155 to install a new motor, with free shipping both ways. But I must ask for my first questions:

1. Does anyone have any experience with repair places? Recommendations or warnings? Does anyone have a spare S9 Autoset motor you'd like to sell me? [Image: smile.gif] Smile

2. I searched the forums for 'repair' and 'motor' but didn't find much. Are there posts here that I missed that might help with repairs?

In addition to looking for repair places I spent most of the day online trying to get up speed on everything that has happened in the last couple of years in the CPAP marketplace. I read through all the reviews here and some were really helpful. My second question is:

3. If you were happy with an S9 Autoset or a PR System One but wanted to upgrade to a later model, which would you recommend, the S10 Airsense Autoset or the Dreamstation?

4. I have Sleepyhead v0.9.3-0 (beta) Revision: cc17b9daeda878991717a238e0166f87a0e8df21 on Xubuntu 14.04. (I will upgrade to 18.04 when it is released in about a month.) Am I correct in assuming that my Sleepyhead will be able to read date from either of these machines?

*Kaiser collects a 20% co-pay, but they can base it on the list price (~1500). I'm sure with their volume they don't pay more than ~$600, so the $298 is closer to a 50% co-pay. It's still cheaper than buying it myself online. And their agreement says I become the absolute owner and they assign the warranty to me.

Thanks in advance for any suggestions or comments. Smile
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Weinmann prisma TS software

March 16, 2018, 10:29 am
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Hello everybody! Nice to know there is such an informative forum about apnea!! I am a newbie in the field.. I have been given a PRISMA SMART machine and I tried to install the Prisma TS software. So, two questions. When I run the software I am supposed to select the device from a list. Is that right? Cause there is nothing on the list... The second question is that I try to import the data from the files, but there is no file that has the appropriate format to be imported.. The files I got from the SD card are xml, and WMEDF. What did I do wrong??

Thank you for your time!
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BiPap taken away/Medicare rules

March 16, 2018, 11:52 am
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Hi All, 
I was wondering if anyone else has had this problem. Sorry this is long.
I have been on BiPap for 8 years.  It has definitely helped me sleep, and definitely has helped me during the day as to how I feel.  I had my original sleep study in January 2010, had sats in the 70's, had apnea and hypopnea, and the diagnosis was made.  I have mostly central apnea, some obstructive due to my weight and a short neck.  

I had another study done in December 2015, which didn't go well.  I never really fell asleep, they did not have the proper mask for me, after telling me I did not need to bring anything.  They used a very small, tight, ill fitting mask;  I am use to the Liberty Mirage mask/hybrid.   I complained to my pulmonary doctor.  He just said it showed I still had apnea.

I went on Medicare in October 2016.  I went to my pulmonary doc for the 'Medicare' visit that month.  He supposedly filled out all the paperwork.  Apria apparently never sent paper work to Medicare for my BiPap machine, the monthly 'rental', during this whole time period.    Apria kept calling me about the bill.   I had made many calls back to Apria during this time period, and never once did they tell me anything about 'Medicare guidelines'.  They kept telling me the doctor needed to send this paperwork or that paperwork.  They put me in the middle, they made no calls to the doctor's office until the end of this mess.  I now have a $1200 bill that has been sent to a collection agency.

I saw my pulmonary doc in February and again told him about the mess.   He said let's get another sleep study.  First he did a home sleep study, which showed I had 5 or less episodes of apnea/hypopnea per hour.  He then ordered a lab sleep study.  I had some trouble getting to sleep.  The next thing I know, the tech is waking me up at 4:30am, telling me I had only 1 episode of apnea, and several episodes of hypopnea per hour.  He said my sat never fell below 88.  He said I didn't have enough episodes to go into the second part of the test, to test me on bipap. 

So when I visited my pulmonary doc after the testing.  He said the study in Dec. 2015 showed no apnea and that's what he had sent to Apria.  He said the current study showed I had few episodes.   He says I don't need to be on bipap!!  It didn't matter that my app on my phone, linked to my machine, said I had nights with varying episodes of apnea and hypopnea.  Sometimes I'd have 1-2 episodes per hour, sometimes 8-9!  It didn't matter that my husband notes at night, that when I sleep without the Bipap (like when I had the respiratory flu in January), I still have loud snoring, gasping and irregular breathing.  It didn't matter that the bipap helps me get a better night sleep and I wake up alert and rested.   NO...I don't qualify under Medicare guidelines for Bipap anymore!! 

So now I am without a Bipap machine!  I do not know what I can even do about it!  Has anyone else had this problem, and how did you handle it?

Tired, groggy, foggy, headachy, angry.... Dont-know
RM
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Plotting OA events vs time

March 16, 2018, 1:33 pm
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I'd like to make a graph of my nightly OA events vs. hour as interpreted by SleepyHead.  Is there a way to export Sleepyhead data over a range of dates into an Excel file, for example?  Why I want to do this is because it looks like my OA events (which can only occur during sleep) are mostly concentrated in my first few hours of sleep - I'd like get a handle on how much sleep I am actually getting on average beyond there first few hours by noting OH activity during these times.
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CPAP 2NITE

March 16, 2018, 1:44 pm
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I typically purchase my CPAP supplies online as they are considerably less expensive then using a local medical supply retailer. I recently received an email from an online CPAP supply company called CPAP 2NITE with really great prices for my ResMed headgear as well as replacement mask cushions. I was wondering if anyone has heard of or used this company? I would like to give them a try but I am a little hesitant as I have never heard of them.

If anyone has any first hand experience with this company I would appreciate hearing from you.

Thanks to all,

Bill
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Has anyone heard of AerSleep?

March 16, 2018, 4:20 pm
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An ad for AerSleep popped up on Facebook. It says it is only available in Canada but there might be something that uses the same principal elsewhere.

I'm not sure if I am allowed to post a url here so if it doesn't show just Google AerSleep.

Does anyone know anything about it?
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ResMed AirSense 10 AutoSet mask setting

March 16, 2018, 5:43 pm
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I just noticed that I had my machine set for full face mask while reviewing  Sleepyhead data. I just recently changed to a ResMed P10 nasal pillows mask. I changed the setting in the clinical menu, but I am wondering if it changes anything or if it is just for reporting. The options are full face, pillows and nasal. I set it to pillows.
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F&P ICON+ Auto Doesn't work Pls help!

March 16, 2018, 8:40 pm
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Recently I bought a used F&P ICON Auto.   When power code plug is put in wall outlet, home screen appear and flushing with turning a circle. 
When pressing smart dial, nothing changes.   Please help immediately!  I can't find a countermeasure in its troubleshooting.    Is this a failure in an electrical circuit? 

Hiro
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