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larsdad
Unread post  Post subject: Sleep Study and Follow Up  |  Posted: Wed Jul 28, 2021 4:09 pm

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In May of 2020, I had a sleep study ordered by my cardiologist due to a slow heart beat. To my surprise, The study revealed I had severe sleep apnea, what? As far as I knew I had no symptoms, no fatigue, no headaches, felt fine in the mornings, etc. Because of covid, only had teleconferences with the Doctor during which time she would ask about my symptoms, and I would say I dont have any that I know about. This went on until early this year when I finally got an in person visit. After going over my studies and identifying some of the risk factors, she convinced me to try CPAP.
So, since May of this year I started using a Dreamstation 2, with nasal mask.( It was originally set to run at 5-15, but got bumped to 7-15 recently.) I was told how to operate the machine and put on the headgear, but no info on how the therapy was going to be evaluated. In April I got a call from the Dr Office and they said my numbers( AHI ?) are high and I needed to make an appt for a titration study. Well my appt just got cancelled because the machines they used are the recalled Phillips machines! Said they would have to reschedule when things got worked out. So here I have been using the machine pretty faithfully, I dont feel any better or any worse than I did before. The Dream Mapper app gives me hrs used, mask fit, AHI. If AHI is the number to look at, it is usually in the high teens, low 20's, and occasionally in single digits. No rhyme or reason that I know of.
I am posting my sleep study and look forward to any insight and help with the issues.


Attachments:
Hosp Sleep Study 5-13-2020.pdf [1.8 MiB]
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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Wed Jul 28, 2021 6:40 pm
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Use OSCAR to show us exactly what is going on with your sleep/airway.

OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation

If your AHI is too high even with the machine then we need to know exactly what kind of events are happening to have any chance of figuring out how to fix the problem and get the numbers reduced.

It all depends on what kind of events you are having because some need more pressure and some won't respond to more pressure so we can't advise what to do until we know exactly what we are fighting.

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Respirator99
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Wed Jul 28, 2021 8:18 pm
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I agree with Pugsy, we need to see the Oscar charts to give definitive advice. However, based on the results of your sleep test you have central sleep apnea, not obstructive apnea as reported. It's very common to see doctors diagnosing obstructive apnea, almost as if they think it's the only form of apnea that exists. In the recommendations he gets it right by saying they need to consider ASV.

ASV is adaptive servo-ventilation, a more sophisticated form of CPAP. It measures your breathing on a breath-by-breath basis and can intervene in a matter of seconds if your breathing falls outside the norm. These machines typically run around $4,000 so insurance companies will make you jump through hoops in order to get one. You need to discus this with your doctor and ensure that if you do go for a titration test that the test must include an ASV. Otherwise they'll just change your CPAP settings which will not give consistent good results. Then they'll try bilevel, which will not give consistent good results, before finally conceding that ASV is the way to go. I've seen this happen many times across the forums.

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larsdad
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 6:49 am

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Thank you both for your replies. As luck would have it I selected the Dream Station 2 machine, and so far it is not Oscar compatible. I think the sleep center uses a program called Orchestrator. Just wondering if it gathers the same kind of info and whether I can get access to their reports?
Anyway, I have an SD card installed so am ready when Oscar becomes available for DreamStation 2.
I will update the board when new info available
My best regards


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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 8:03 am
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Does anyone know if DreamMapper is now compatible with the DreamStation 2? If it is...there is a breakdown into event categories available on the DreamMapper website data. It offers total OAs, CAs (centrals) and hyponeas...and with the total hours and those event totals we can manual figure out the hourly average.

I don't know of any way to get Orchestrator but DreamMapper is easy

https://www.usa.philips.com/c-e/hs/slee ... eam-mapper

https://www.mydreammapper.com/Account/L ... urnUrl=%2F

The DreamStation only gives the generic AHI but DreamMapper will let you break the AHI down into event categories.
If you had central apnea prior to starting cpap it is unlikely that cpap will fix the problem. Not impossible but not very likely.

I suspect your AHI is going to be primarily CA/Central.
Probably why they are talking about your needing an in lab titration sleep study to figure out what machine and what pressures you are going to need.

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larsdad
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 2:29 pm

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Pugsy,
Thanks again for more info. So my last night reading on DreamMapper showed 8.24 hrs, an AHI of 12. Broken down it further showed total clear airway apnea’s of 68, Total obstructive 6 and Hypopneas of 27.
So the 12 seems to be the total apnea’s 101 divided by 8.24? Are you also saying the clear airways are the centrals?


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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 3:35 pm
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The AHI of 12 is an hourly average of all the flagged events added together.

Clear Airway apneas...central apneas. The airway is open but no air flow is happening. Hold your breath for 10 seconds...that is pretty much a 10 second central apnea or clear airway apnea. No air is moving because you aren't trying to breathe.

Obstructive apneas and/or hyponeas...no air is flowing but we are trying to breathe but the air flow is being blocked by soft tissue in the airway getting in the way and either totally blocking or reducing amount of air flowing. The air can't get past the tissues blocking the airway.

We usually deal with obstructive events with more pressure but more pressure won't make a person breathe if they aren't breathing on their own which is what a central apnea is....there is no effort to breathe.

AHI last night of 12

68 central apneas in roughly 8 1/2 hours of sleep means Central Index (hourly average) is approx 8. I don't know how that compares to the sleep study (can't download it at this time to read it) but that also means the obstructive stuff was roughly 4 per hour average.

This is where it would really be nice to see when those flags occurred because it wouldn't be impossible for the centrals to be awake related events happening because the obstructive events caused an arousal.

Someone who can download that sleep study....how many centrals vs obstructives are we talking about??? I can't see the sleep study.
Not on a computer right now where I can download the file.

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larsdad
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 4:05 pm

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Pugsy,
From my sleep study
144 total apnea’s: 3 obstructive, 141 Central and 62 obstructive hypopneas.
Now that I am starting to understand, not liking the numbers.
In looking back at my AHI’s, the majority of them are classified clear airway issues


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Respirator99
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 6:47 pm
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From the original study report, AHI is predominantly central, with only a handful of obstructive apnea and some hypopnea. Also a significant periodic limb movement.

Attachment:
Sleep_summary.PNG
Sleep_summary.PNG [ 295.95 KiB | Viewed 1142 times ]


This is definitely pre-existing central apnea. You are very unlikely to get consistently good results with anything but an ASV, in my experience.

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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 9:15 pm
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Okay...thanks Respirator99 for posting the sleep study.
Hourly average for centrals was 22...so the 8 per hour now is a reduction but not enough of a reduction IMHO.

Most likely you will need a machine that can treat both central apneas AND obstructive apneas and the best one for that job is the ASV machine.
It can auto adjust for the obstructive stuff and it will breathe for you when the centrals happen.

I doubt seriously that your central hourly average is going to change/reduce enough with the current machine but we have a bunch of hoops to jump through to get prescribed the ASV model machine.

The model I would recommend....ResMed ASV model which in the AirCurve 10 latest model line is the AirCurve 10 ASV.
There is a slightly older model in the ResMed line called the S9 Adapt which is essentially the same thing as long as you get the model 36037.

Now it wouldn't be totally impossible for those 8 per hour average to reduce further down to acceptable levels but the odds are extremely slim that will happen.

To get insurance to spring for the ASV machine you will have to jump through whatever hoops they require to prove that you need that high dollar machine. They aren't cheap and insurance companies will use any excuse in the world to put off buying you that expensive machine.

You need to be getting with your doctor and talking about best way for you to move ahead with the in lab titration and all the paperwork needed to make the insurance company happy.

The PLMD stuff....might need to be addressed separately but sometimes it will reduce once the sleep apnea is optimally dealt with.
Separately means meds but it's worth crossing your fingers that it will reduce once the sleep apnea is under control. It can happen.

Alternately if you have the money and the will....you can always find an ASV machine and work it out yourself if you want to go the DIY route.
It takes a lot of work and education and a bit of time but it can be done.
If you want to look at this option let me know as I have some documents to start the education process that you can look at. It isn't rocket science and DIY on ASV can be done but it takes a lot of education/work to understand what you are doing.

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Respirator99
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Thu Jul 29, 2021 10:11 pm
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Quote:
Now it wouldn't be totally impossible for those 8 per hour average to reduce further down to acceptable levels but the odds are extremely slim that will happen.


Agreed. What's likely to happen is that you'd get some good nights followed by some shockers. This is why I used the word "consistently" in my earlier post - it's almost impossible to get consistently good results except with an ASV.

It's also one reason why a single-night titration study can't really be relied on - it may tell you that your CPAP is giving good results at a certain pressure, but that can't be consistently replicated. It's much better to make use of the auto-titrating properties of the machine over a few weeks to zero in on the optimal settings. It does take a bit of trial and error, but will end up giving better long term results.

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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Fri Jul 30, 2021 6:12 am
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Just so I am clear....when I am talking about an in lab titration study it's gotta be with the ASV machine...not a regular cpap/apap/bilevel.

Now unfortunately...US insurance companies will likely force starting with the basics and it means a sleep study starting out on cpap/apap or maybe regular bilevel and THEN moving on to ASV titration if that doesn't work out. The problem with that approach is there's not enough time in the night to do it all so usually there's another night involved.

Now maybe the doctor will put his foot down and insist on starting with ASV titration but I don't have much respect for most of them.

On occasion the doctors will step up when the data is indisputable like 20 or 30 centrals per hour and/or maybe a bunch of Cheyne Stokes Respiration going on but when the central AHI is around 8 to 12 even...they will play the waiting game because there is the remote chance that the central index will get down to 5 or less which technically on paper doesn't warrant the central apnea diagnosis.

In the US and when insurance companies are involved for paying for this stuff....they don't make it easy for the patient to get speedy and optimal medical care because there real job that no one talks about is not paying for stuff. It sucks but it is what it is.

Which is why I also offered the DIY option..

I hate insurance companies....currently fighting with my husband's insurance over their refusal to now pay for a procedure that they initially approved.
We jump through all the hoops and they still screw us.

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larsdad
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Fri Jul 30, 2021 12:44 pm

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Pugsy and Respirator99,
thank you for your thoughtful and informative information, it's appreciated.
The irony of the thing is I didn't have any symptoms that would indicate sleep apnea. In fact after the sleep study when the Dr advised me I had severe apnea, I said you got to be kidding me. I feel great, I'm not tired and need naps, no headaches, etc. All her apnea questions were answered with "I don't feel that way." Anyway she appeared incredulous that I didn't feel terrible and suggested a home sleep study as a second opinion. I took the Alice NightOne Home Study in Dec 2020. It showed 107 events of which 2 were OA, 105 Hypopneas and O centrals, with 19 as average events based on hrs slept.
Now I would say the in lab results are probably more accurate, but it is interesting to see the divergence. Anyway I told them I would give CPAP a go and here we are.
I will be honest. It is hard to evaluate how it's going because I didn't feel bad before I started and not sure I don't feel worse now that I have been doing the therapy. The other stupid thing is now I feel I want to treat the Apnea(I didn't know I had)
The DiY thing is not out of the question. I would like to talk to the Sleep Center to see when they will be back up running and evaluate the time frame. I have checked the internet CPAP stores for the ResMed Aircurve and find it pretty much out of stock everywhere. Any leads?
Thanks again for helping me think this thing through


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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Fri Jul 30, 2021 3:20 pm
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Should you be willing to buy a slightly used AirCurve 10 ASV or even the older big brother the ResMed S9 Adapt model 36037 I may have a lead on a private sale.

And yes, sleep studies done in a lab setting are going to be more accurate in terms of what kind of events a person is having than the home study depending on what type of home study a person had.
I am not familiar with the Alice home study so I don't know how accurate it is or isn't. Looks like it says a lot of hyponeas as opposed to centrals.
It wouldn't be impossible for Alice to mislabel hyponeas that should have been centrals.
In lab studies always are more accurate though because the tech has more data channels collected to evaluate.

You can think about it and give it a bit of time to see what happens.
It wouldn't be totally impossible for things to settle down with the current machine. Slim chance but a chance nonetheless.

You had approx 14 minutes of desats in O2 levels below 90% and the lowest it went to was 83%....so not near death horrible kind of thing
To give you a reference my O2 went to 73 % for almost an hour and I was having killer morning headaches from it and my in lab sleep study was short in terms of time slept. If I had slept longer my time at low O2 would have been much longer. I think I barely got 3 hours total sleep time during my diagnostic sleep study.

Talk with your doctor as well. You aren't having much in symptoms now but that doesn't mean that in a few months or years of no treatment that it won't worsen or have symptoms show up.

In the meantime I would offer one idea just on the outside long shot that your Central Index of 8 is maybe related to the Obstructive index causing arousals...Maybe try to reduce the obstructive/hyponea stuff and see if the centrals reduce. It wouldn't be impossible to have that happen and it's something you could do while you are waiting to talk to your doctor.

How do we do that? Increase in the minimum pressure...1 or 2 cm increase and see what happens. That's what would be done in the titration sleep study to try to reduce obstructive events and then they would watch for centrals to see if reducing obstructive in nature events made any difference with the centrals at all.
Again...slim chance but not an impossible chance and a worthwhile experiment since right now you have all the time in the world.

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Respirator99
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Fri Jul 30, 2021 8:25 pm
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Quote:
I have checked the internet CPAP stores for the ResMed Aircurve and find it pretty much out of stock everywhere. Any leads?

There was no shortage of stock in Australia a few months ago when I got mine. They are made here, so that's not really surprising.

The Resmed AirCurve 10 CS Pacewave ASV (to give it its full name) runs a little under AU$4,000, which is about US$3,000 at current exchange rates. Whether or not Australian retailers will supply offshore I don't know - you could ask the question. Also, Resmed USA would be unlikely to honour a warranty on a machine not supplied through their channel.

Quote:
In the meantime I would offer one idea just on the outside long shot that your Central Index of 8 is maybe related to the Obstructive index causing arousals...Maybe try to reduce the obstructive/hyponea stuff and see if the centrals reduce. It wouldn't be impossible to have that happen and it's something you could do while you are waiting to talk to your doctor.

That's a good suggestion. However the high untreated central index makes me think it's unlikely these would be arousal apneas. But there's no harm in doing some experiments in the mean time.

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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Sat Jul 31, 2021 6:07 am
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Respirator99 wrote:
That's a good suggestion. However the high untreated central index makes me think it's unlikely these would be arousal apneas. But there's no harm in doing some experiments in the mean time.


I agree. Odds are not good that we would have good luck BUT I have seen it happen where I would have thought no way in hades will that work. I have seen someone put on cpap/apap with nothing but centrals have their central apnea be resolved.
That's why here in the US insurance companies try to force cpap use first. They do it because it MIGHT work and that's a good enough excuse for the insurance companies to try to save money. I admit it is an extreme long shot but no matter how much of a remote possibility it is....not totally impossible.
I remember helping a woman who had both OSA and CSA and it took a bit but once we got the OSA stuff dealt with her central index went from 25 per hour to maybe 1 or 2 per hour. Was NOT treatment emergent centrals either.
The reason why we tried it was because she had no insurance and no money to buy an ASV and she wanted to at least try to make the machine she had work because there wasn't any way for her to get an ASV at the time.

Nothing to lose to try though...even if odds are really, really against a person.

Oh...in case you didn't know....ResMed won't let any online retailer they have a contract with sell outside the physical address of that online retailer. US retailers like cpap.com can't sell or ship to outside the US address...Canadian online retailers can't sell outside of Canada....England retailers can't sell outside of England and I would bet that Aussie online stores can't sell/ship outside Australia. It's a common clause in their contracts with ResMed to get the best wholesale prices that they have to agree not to ship outside the country they are domiciled in.
Not even a lowly ResMed nasal pillow replacement or a ResMed filter or hose or anything with ResMed name on it can be shipped outside the business country address.

Now 3 rd party sellers who got their inventory from some place other than a contract with ResMed...that's a different story.
They haven't signed anything directly with ResMed so won't have the same restrictions.

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larsdad
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Sat Jul 31, 2021 9:06 am

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Once again, Pugsy and Respirator99, thank you thank you.
I think my plan of attack will be to try to see the Dr. and discuss these issues we have identified. I had called last week about the sleep lab trying to find out if they have solved their equipment issues but haven’t heard back. Pugsy, the original setting by Dr was 5-15. After a couple of weeks I asked them to increase it and they did to 7-15. After that I got the info on how to change the setting myself and went to 8-15, and it starts out at 9. In looking back over my numbers on DreamMapper, it seems the avg has been between 8.7-9. There doesn’t seem to be any rhyme or reason to the AHI numbers, one night its 21 the next night its 7 with same pressures. The consistent thing is the clear airway obstructions are the biggest number. Since the average pressure has been near 9, do you think I should bump up to 10 to start?
I think for right now I will hold off on moving to a new machine but I am going to try and motivate the dr to see me asap to discuss. I will let you all know how it’s going in the meantime.


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Pugsy
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Sat Jul 31, 2021 1:39 pm
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I would try maybe 9 minimum or even 10 minimum and see what happens.
Nothing to lose really.

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larsdad
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Wed Aug 04, 2021 11:56 am

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so a couple of things have happened. The Sleep Lab called and said they are 2 maybe 3 months out from getting new equipment and set up to do any studies. That definitely puts a kink in my titration study.
Next, I upped my minimum to 10 cmH20, and I haven't noticed a difference, the first night with 8.32 hrs sleep AHI was 8.6 (52 CA, 9 OBS, 12 HYP), the next night with 8.1hrs was 16 (95 CA, 28 OBS, 8 HYP)
Last night I bumped to 11 as a test. Results after 7.52 hrs were AHI of 14.2 (67 CA, 27 OBS and 18 Hyp)
I am going to try contacting the Sleepy Dr and after discussing ask her to prescribe an ASV machine. It was actually mentioned in first sleep study because of central apneas.
What do you all think?


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Respirator99
Unread post  Post subject: Re: Sleep Study and Follow Up  |  Posted: Wed Aug 04, 2021 6:43 pm
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Well I've been saying all along that there is an ASV in your future. These machines are expensive, but very effective. You may need to make prior arrangements with your insurance provider to ensure they will cover the cost (or part cost) or otherwise be prepared to outlay your own money. If insurance won't come to the party, you might be able to get a gently used machine at a dealer like Second Wind CPAP. I know forum member LSAT sometimes sells machines, so it's probably worth sending him a message.

One other issue we haven't touched on above - how's your heart? There was a study a few years ago which contraindicated using ASV for people with severe congestive heart failure. I don't know if that is still the case, or whether subsequent studies have overturned that recommendation.

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