New to forum - sleep study results question

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this1chick

New to forum - sleep study results question

Post by this1chick » Fri Jun 16, 2017 7:21 pm

Hi all,

I am waiting for administrator activation of my username, but am chomping at the bit to get some answers.

I have had exhaustion and fatigue for longer than I can remember. I went to doctor after doctor trying to figure it out, at first thinking it was solely due to a hypothyroidism diagnosis. After 10+ years of solid thyroid levels, however, my symptoms had not improved. I finally went to a sleep study 2 months ago, followed by a titration study.

My doctor is not the best in terms of listening to the questions I have. He brushes off all of my questions to "next visit" which basically results in no answers. (Probably going to see another specialist at some point, but going to make do with the results I have at the moment.)

The first study, with no CPAP, yielded the following results:

Total arousal index was 24 per hour of sleep.
The apnea hypopnea arousal index was 12 per hour.
The limb movement arousal index was 2 per hour.
The spontaneous arousal index was 10 per hour.

0% of time had oxygen saturation < 90%, so I am not factoring that in as a major player.

Overall AHI was 12 per hour, consisting of 0 apneas, 0 obstructive apneas, 0 central apneas, and 60 hypopneas.
Supine REM AHI was 60 per hour.

-----------

The second study, WITH CPAP, yielded the following:

Total arousal index was 16 per hour of sleep.
The apnea hypopnea arousal index was 5 per hour.
The limb movement arousal index was 1 per hour.
The spontaneous arousal index was 10 per hour.

Overall AHI was 9 per hour, consisting of 23 apneas, 3 obstructive apneas, 20 central apneas, and 27 hypopneas.
Supine REM AHI was 12 per hour.

My main question is this:
After the 2nd study, my doctor prescribed CPAP treatment at a pressure of 6 cm H2O. However, if you look at the bolded numbers above, why are these numbers so much more terrible than my initial study withOUT CPAP? If the CPAP is essentially causing more apneas, how can that possibly be helpful to me in achieving quality sleep?

Forgive me if I'm missing something obvious. I have browsed the forums for quite some time but am hoping someone can kindly tell me what I'm missing. Is my doctor a moron?

TIA!

TedVPAP
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Re: New to forum - sleep study results question

Post by TedVPAP » Fri Jun 16, 2017 7:36 pm

Welcome to the forum.

It is very important for people to take full ownership for their medical problems and seek help which you are doing. Doctors are consultants. They can be knowledgeable but they don't live it so patients are also a very valuable source of perspective and information.
I am confident that the knowledgeable people in this forum can help.

My simplistic understanding is the first test concludes that you have an issue. Now it is about getting the therapy adjusted to best met your needs.

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Guest

Re: New to forum - sleep study results question

Post by Guest » Fri Jun 16, 2017 7:57 pm

this1chick wrote:My doctor is not the best in terms of listening to the questions I have. He brushes off all of my questions to "next visit" which basically results in no answers. (Probably going to see another specialist at some point, but going to make do with the results I have at the moment.)
Is this doc a sleep doc? You may indeed need to find another doc either way.

The fact that you had centrals during the titration study makes think the standard cpap is not gonna work for you and you may need another titration with an higher end cpap. Has your doc mentioned anything like that?

Tho I do think you are on the right track now. Hopefully your limb movements will subside when the treatment gets dialed in.

this1chick

Re: New to forum - sleep study results question

Post by this1chick » Fri Jun 16, 2017 8:01 pm

Guest wrote:Is this doc a sleep doc? You may indeed need to find another doc either way.

The fact that you had centrals during the titration study makes think the standard cpap is not gonna work for you and you may need another titration with an higher end cpap. Has your doc mentioned anything like that?

Tho I do think you are on the right track now. Hopefully your limb movements will subside when the treatment gets dialed in.
Hi, thanks for the response. Yes, he is a sleep doc. I am really bothered by his unwillingness to listen to my questions - he always rushes through my appointments. He didn't mention anything at all other than "your second study showed improvement with the CPAP".

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Julie
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Re: New to forum - sleep study results question

Post by Julie » Fri Jun 16, 2017 8:30 pm

Hi, first let me say that the previous poster is a problem child here and it's recommended to take a lot, if not most of what's said with a huge grain of salt... not a personal thing, but a forum consensus... big problem.

Second, when you sleep on your back - and get all those hypopneas (wannabe apneas) you're inviting loads more events than you'd otherwise have, and we go out of our way to sleep on our sides even to the point of wearing backpks, etc. for a time to transition. If you were given another test where you did not back sleep, you'd likely have very, very few events at all... something to consider if I were you. And the 'centrals' are likely just the few many get on dozing off and prior to waking, vs the serious ones - the ones to worry about - that you'd have in bunches all night long. We call what you probably have 'sleep wake junk' and don't worry about it, certainly not unless you have real evidence over time of the other kind.

And FYI there are special pillows you can get , with cutouts for masks, to help you sleep on your side.

Guest

Re: New to forum - sleep study results question

Post by Guest » Fri Jun 16, 2017 8:40 pm

this1chick wrote: Yes, he is a sleep doc. I am really bothered by his unwillingness to listen to my questions - he always rushes through my appointments. He didn't mention anything at all other than "your second study showed improvement with the CPAP".
Oh, I certainly agree. What I have done before is to write all of my questions in a notebook, leave room under the question for the answer/reply/ reaction. Openly use this notebook and write any response or reaction in this book allowing the doc to see what is going on. Do not let the doc leave until you have your answers. If he does then you don't need to feed his habit, find another, make the next appt. so you are not under pressure before you find another doc just be sure to cancel it a day or to before. Or you can just reschedule it if you really are upset with them. Just make sure you already have copies of all your records.

And always, always get a copy of the sleep study results and the docs notes of each visit. At times they write things in there that never happened. That includes copies of blood work or any other tests performed.

You should also write things from your daily sleep in the notebook. Make note of your equipment make/model, mask make/model, cpap pressure and comfort settings. Each morning make a note of how you felt; things that went well; and things you want to work on or improve. If you wait til you get home you may forget.

this1chick

Re: New to forum - sleep study results question

Post by this1chick » Fri Jun 16, 2017 8:47 pm

Julie wrote:Hi, first let me say that the previous poster is a problem child here and it's recommended to take a lot, if not most of what's said with a huge grain of salt... not a personal thing, but a forum consensus... big problem.

Second, when you sleep on your back - and get all those hypopneas (wannabe apneas) you're inviting loads more events than you'd otherwise have, and we go out of our way to sleep on our sides even to the point of wearing backpks, etc. for a time to transition. If you were given another test where you did not back sleep, you'd likely have very, very few events at all... something to consider if I were you. And the 'centrals' are likely just the few many get on dozing off and prior to waking, vs the serious ones - the ones to worry about - that you'd have in bunches all night long. We call what you probably have 'sleep wake junk' and don't worry about it, certainly not unless you have real evidence over time of the other kind.

And FYI there are special pillows you can get , with cutouts for masks, to help you sleep on your side.
Hi Julie,

Thanks for your response. I left out the positional results in my first post because I was trying to wade through the "main" results, but basically, my Left side AHI is markedly better than Back or Right.

Regarding the way that I sleep - I have always been more of a side/stomach sleeper, but probably since having my first child and being forced out of a stomach position, I have ended up on my back while sleeping, without intention. I guess I just concluded that there's no way that I can force myself to stay in a side position unless I strap myself in a permanent position, which isn't safe.

To interpret your reply better - are you saying that I should forgo the CPAP and just use a pillow, or use a combination? I don't think you are saying to forgo the CPAP, but just making sure. Also, are you saying that the majority of the "new" apnea events that did not occur during the first test are all "sleep wake junk" stuff?

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Julie
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Re: New to forum - sleep study results question

Post by Julie » Fri Jun 16, 2017 9:03 pm

No no, the obstructives are... obstructive, but if other events were counted as centrals, or clear airway events instead, and did not otherwise appear overnight apart from just-as-you-doze off and/or just prior to waking, then they usually are not considered to rise to the level of a dreaded central apnea diagnosis... just 'junk' events that aren't meaningful.

As far as my suggesting you don't need Cpap if you sleep on your side, I couldn't do that, but.. if you can download (free) the software most use here, and post pix according to instructions in the link below, we can tell what's going on a lot better... so maybe try it out (and it is important to read all the info to get it right... not 'hard', just needs doing step by step).

http://sleep.tnet.com/resources/sleepyhead

and

http://sleep.tnet.com/resources/sleepyhead/shorganize

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Okie bipap
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Re: New to forum - sleep study results question

Post by Okie bipap » Fri Jun 16, 2017 9:04 pm

You still need to use the cpap machine. The cpap pillow has cut outs on the side of it that allow you to sleep on your side without the pillow interfering with the mask.

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this1chick

Re: New to forum - sleep study results question

Post by this1chick » Fri Jun 16, 2017 9:10 pm

Thanks for all the responses so far. Forgive me for my noob questions, but I am still really confused about my second sleep study. Why did I have obstructions and actual apneas with the CPAP, where I only had hypopneas without? Is the CPAP actually causing more problems?

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Julie
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Re: New to forum - sleep study results question

Post by Julie » Fri Jun 16, 2017 9:15 pm

Labs often test for 'baseline' or worst case scenarios, asking you to e.g. sleep in certain positions, etc... to see what results show then. But in any case, we can't say just based on two nights 'study' what's going on or if any of it is serious (I doubt it from your numbers). Second studies (titrations) are more about finding what pressure levels to set machines at, not necessarily reporting results the same way the first night's study was... that was to see if you even have apnea at all, and in what positions, and to what extent. More will become clear when we can look at your software reports (try to include 2-3 nites' worth) because it's hard to say much just based on what you submitted. Your using Cpap or not right now is not particularly valid because we don't know how the machine was set up or how well the mask fit, and other factors.

Guest

Re: New to forum - sleep study results question

Post by Guest » Fri Jun 16, 2017 9:23 pm

this1chick wrote:Thanks for all the responses so far. Forgive me for my noob questions, but I am still really confused about my second sleep study. Why did I have obstructions and actual apneas with the CPAP, where I only had hypopneas without? Is the CPAP actually causing more problems?
That is hard to answer w/o knowing your medical history but it could be (w/o knowing what pressures these were detected at) you have diff exhaling against even a slight pressure?

But I'm gonna say that IF these centrals were detected in a lab during your PSG they are indeed centrals and they are not SWJ or you have some respiratory problems.

No worries, ask away with the questions - everyone here was a noob at one time.

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Julie
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Re: New to forum - sleep study results question

Post by Julie » Fri Jun 16, 2017 9:33 pm

One more thing to be clear about - the severity of your diagnosis - the number of events you had on testing, has no bearing of what pressure your machine is set at - the pressure needed to keep YOUR particular airway more open is NOT based on severity or number of events, but just on what works for you... someone with lots more events on testing may need little pressure, while someone else with almost no events may need a lot, possibly because of an anatomically narrower airway to start with.

this1chick

Re: New to forum - sleep study results question

Post by this1chick » Fri Jun 16, 2017 9:36 pm

You mean, this ISN'T going to be simple and easy?

I see what you guys are saying now. So basically, once I get set up with my machine, monitor the results and that will start to give a more complete picture.

My one hold-up at the moment is actually getting the equipment. The first supplier my doctor sent the prescription to has essentially been dodging me, so I finally got fed up and had my prescription sent to a different distributor. I am really hoping there is not much of a delay, because my fatigue is permeating every aspect of my life right now.

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Julie
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Re: New to forum - sleep study results question

Post by Julie » Fri Jun 16, 2017 9:39 pm

We'll wait... but do try to return to this thread when you come back so we'll be able to follow things in a straight line rather than chase around for history, etc. Night for now