CPAPtalk.com

Hello:

Can anyone please help me with my sleep studies? I've suffered a lot with untreated severe sleep apnea for years, and i've gone crazy with sleep studies and doctors who seem to all and each one show and say a different thing.

They're not supposed to show central sleep apnea in the reports, but they do in the graphics? Can anybody read the graphs? Perhaps a respiratory therpapist?

Perhaps i can send any or some of you my sleep studies so you can help me. I know this is the doctor's job, but like i said, it's all confusion.

I can't get to log in to this website every time i visit, so my equipment now is a Respironics System One BIPAP Auto Biflex, IP: 12, EP: 6. My mask is the Simplus. But this is self prescribed and titrated, i bought it online. I still don't have a definitive sleep study or titration.

Please help, i'm very sick!

JohnnyBravo
(From South America)

Hi - I'm not clear about which studies and reports you talked about but would like to help. Can you download your graphs etc. to Imgur.com and then leave that link in this thread? You said you don't have a 'sleep study' but then say you've had many over the years... confusing to me and I wonder if you can at least cut and paste some of the recent results into this thread (the graphs have to be done through the other website as you can't post those here). Whether or not any of it shows central apnea or not depends on the study, what equipment they used, etc... so will have to wait and see.

I also don't know why you can't register... what seems to happen when you do it?

An occasional central apnea flagged on the PSG sleep graphs doesn't necessarily mean that a person gets a diagnosis of central apnea or complex sleep apnea (both obstructive and centrals).
It's possible that the person wasn't asleep when it was noted and thus wouldn't count in the overall diagnosis or it might be that it was a sleep stage transition central and those are normal and don't count towards a central diagnosis unless someone has a very large number of them.

So seeing a central flagged on the graphs from a sleep study doesn't necessarily mean that there is a problem with centrals.
It all depends on how many and if you were for sure asleep or not.

Hi:

Thanks for posting and helping. I was finally able to log in, i had to sign up again, it didn't let me do it before.

I know that Pugsy, i've been explained that several times. Occasional central apneas are fine. But they've been sort of an issue and doubt the whole time.

I had a servo machine for several years because in 2008 a neurologist in a sleep clinic in Columbus, Ohio gave me that diagnosis of complex sleep apnea from taking a sleep study and titration there. Then came back and the studies in my country (Colombia, South America) didn't show centrals IN THE REPORTS. The previous ones didn't either before.

Then in 2010 i came back to the US and took a titration study only at Stanford done with my own kind of machine (a servo) and they readjusted the settings, saying i was undertreated. But that night i slept poorly as i have for many years.

So i kind of forgot about central sleep apnea and thinking that would only complicate things more and thought i should only think i have obstructive sleep apnea. My studies show a lot of hypopneas and arousals, but obstructive sleep apneas too.

Now, after not using the asv, it broke, using dental appliances, trying sleeping positions, and just not doing anything out of exhaustion, not being able to use the machine and not knowing what else to do (also after MMA surgery), i'm back to the start.

So, i just finished a new round of looking for help with sleep doctors who tell me there's no central sleep apnea, and that surgery didn't work and it made me worse. I went from having 60 AHI to 80. One of them told me let's hope it's temporary and that if surgery didn't work let's at least hope it didn't make me worse. I feel post op symptoms that have made me feel worse and that my apnea is worse like a lot of nose congestion (post nasal drip) and soft palate numbness, swelling and pressure. They told me to give it 6 more months to the year for all of this to go away and then take more tests and consider more treatment.

My last sleep study (post op) also shows desats and tachycardias. Either i didn't have that before, or the sleep studies didn't show that. It's all been too confusing with sleep studies and doctors, AND my sleep apnea is severe, AND i'm a difficult patient i don't know.

So, meanwhile i'm back to cpap cause i'm that bad, although i can't tolerate it or don't sleep better with it. I bought a second hand bipap at second wind cpap.com. I've done what i can to use it, though i feel i can do better as always. One of my doctors say cpap raises my arousals in my titrations and cpap is not for me, but then after he saw my post op sleep study he sent me off to self titrate at home with the bipap in auto.

The thing is, i recently exchanged emails with a respiratory therapist and sent him my 2 last sleep studies (pre and post op) and he said i clearly show central apneas in them. He sugested looking into ASV and oxigen. I don't understand this, as i don't know how to read the graphs. The reports, as i mentioned, don't mention i have centrals. I asked him to explain this to me but he hasn't replied.

A guy who does maintenance to cpaps also told me something similar about my breathing, referring to the graphs, the curves of my breathing, sugesting that it's not a normal breathing or obstructive sleep apnea curve. I didn't even think about graphs or breathing curves before.

So this is the 3rd time central sleep apnea has been brought up. I do have to say that i do feel sometimes as if i stop breathing in my sleep from lack of effort or something, specially now after surgery. I've always had chronic acid reflux and that makes me have that feeling of choking in my throat, specially when i lie down. When i'm using the bipap now, sometimes i wake up feeling like i stop breathing and i need the machine to pump air in cause i won't breathe, and it doesn't do it cause that's not the way it works.

Together with the reflux, i've gained a lot of weight in the last 2 years (40 lbs, i'm 40 years old, 5' 11'' and 200 lbs). The chronic bloating and reflux (LPR) that makes me have shortness of breath and breathing issues I think is what causes this central apnea if i have it or central apnea like feeling when i sleep. I have so much weight in my abdomen that is so large now, it always presses up against my left diaphragm, specially when i lie down.

I forgot to mention i had a hiatal hernia that was fixed with a Nissen Fundoplication. I've been told and feel reflux itself can cause breathing and sleep breathing issues (i don't know if central sleep apnea), and i already know sleep apnea and reflux are linked, and that it's a chicken and egg thing or that apnea causes reflux. I've been told i need to treat reflux for my sleep apnea to get treated.

In my last test i showed no reflux of any kind, but it tested positive for Eosinophilic Esophagatis, supposedly secondary to Candida, which i also have in my stool, and that would explain my chronic bloating making me have breathing issues, which would mean i have systemic candidiasis. I'm on treatment for that, but that's another old mistery, for Candida is so hard to kill and not all doctors believe in that.

I probably shouldn't have gone on and on about my digestive issues and bore you, it's just that they've become as bad as the apnea itself. I'm always weak and out of breath, and they kind of explain the supposed central sleep apnea or the fact that it's been so difficult to treat.

I also have metabolic syndrome now (overweight, cholesterol and diabetes). That's why i'm even so sick and desperate. My following titration is in one month, but i'm thinking i should buy an ASV from second wind cpap.com in the mean time? I don't know.

So i can't post the reports here for now cause i don't have them in digital and they're in spanish anyway, but i did uploaded them to Imgur.com. Thanks Julie. I hope someone sees them and understands what's going on with me. Sometimes i feel like doctors miss it. What i meant by saying that i don't have a sleep study is that i feel i don't have a definitive one, cause either each one shows a different thing or it seems to be wrongly interpreted in the report, I don't know.

The link is: http://jhonfa.imgur.com/
Those are my 2 last sleep studies (not titrations), pre and post op. They're in spanish, but they show the graphs and tables. Perhaps I should upload the other 2 ones from the US (sleep study and titration in 2008 and titration in 2010).

Sorry if the way i write is confusing and for the long post. I tried to write all the info so i clear some doubts for you to please help me if you can.
Thanks a lot!

John.

What machine do you have now?
What are the results you are seeing now from that machine?

The centrals noted in the post surgery report aren't very many. The bulk of your problem is obstructive and not central. At least during this study.
It really isn't helpful to try to go on the results of a 2008 sleep study because so much time as well as surgeries have passed since that study.

I have no idea if you need ASV at this point. 17 centrals over the entire night won't automatically earn a ASV. What is known for sure that you still have OSA and that needs to be treated. Bummer that the surgery didn't help but that happens more times than people realize.
If you had soft tissue removal along with the MMA then it wouldn't be the first time that someone with plain OSA would be having trouble treating the OSA.

He said he's using a Respironics System One BIPAP Auto Biflex, IP: 12, EP: 6.

Thanks Julie,
I missed that part about the equipment...not awake yet.

All I know to do is start with what is known and available.
Start with reports from the machine currently used and see what is happening there.
We know for sure that the OSA needs treating.
Settings of 12 inhale and 6 exhale...that's PS of 6 which is borderline for possibly making centrals worse if there are even any centrals now. At this point we don't know what is going on for sure with the therapy.

Need to see some typical reports and go from there.

How to post images
https://sleep.tnet.com/reference/tips/imgur

How to organize (3 pages so read them all)
https://sleep.tnet.com/resources/sleepyhead/shorganize

Hide the calendar and pie chart...so that all the statistics on the left along with AHI show up.
On the right side...only need these graphs...Events...Flow Rate...Pressure and Leak. Don't need all those other graphs.

Start with what is known that needs to be fixed and fix those things and see what's left over.

Hi Julie and Pugsy:

Thanks for posting. Yes, I'm using a Respironics System One BIPAP Auto Biflex, IP: 12, EP: 6.

I don't have Sleepy Head, I will get it and learn how to use it so i can post to Imgur.

I didn't have soft tissue surgery, i almost did, but since it has such bad reputation, i went ahead with MMA first. Didn't know this one has a bad one too. Statistics say it has the highest success rate, but i guess that doesn't apply to all the patients. I was hopeful, but perhaps my obstuction is that bad, or the kind that's only treatable with cpap.

I tried to check my equipment in my profile and it was already there, so i don't know why it's not showing in my posts.

I thought with posting just my profile/account it was enough to see the 2 albums i created for the 2 sleep studies. Pugsy, didn't you see the 2016 one also?

I probably shouldn't say this, and please delete this message if it's wrong. The respiratory therapist that mentioned centrals in my sleep study is Mark from SecondWindCpap.com. He still hasn't replied explaining it. At this point I believe more in respiratory therapists and patients than Doctors. I know that's wrong, but hey...

I know the right thing to do now like you said, Pugsy, is to use my Bipap and get the info out of it with Sleepy Head and post it.

Thank you so much guys for all your help.

John.

Yes, I saw the 2016 sleep study results...17 centrals isn't really all that many over the entire night. Now if it were per hour average that would be a different story but even in Spanish I could tell that was over the entire sleep recording session.

I know Mark at secondwind...nice guy and knows his stuff. Tell him Pugsy says hi...he knows me.

My thoughts about all this...fix what we know needs fixing and that's for sure the obstructive apnea stuff and then see what is left that might need fixing.

Your machine isn't showing up in the equipment profile because the links are broken.
Add your mask (it should work) and then in the comments section add your machine...PR S1 BiPap model whatever it is. Model number is a 3 digit number on the blower unit and probably will have DS or REF in front or behind the 3 numbers.
This helps us know exactly what you are using at a glance. You can add your pressure settings to the comments if you wish. Makes evaluating things go a little faster.

Since we are having to deal with post surgery anatomy...not much sense in worrying about what the results were pre surgery. Things change with surgery and we can't really compare old studies to new studies.
The most recent study is the starting point that is the most important thing right now. It's what we have to deal with right now.

JohnSerrano wrote:Hi Julie and Pugsy:

Thanks for posting. Yes, I'm using a Respironics System One BIPAP Auto Biflex, IP: 12, EP: 6.

put it in the comments of the equipment section of your profile, so people quit asking

just say "respironics 760" instead of "Respironics System One BIPAP Auto Biflex,"

Hi:

So after you all told me so many times i finally was able to write down my equipment in my profile. Thanks.

I downloaded Sleepy Head following the instructions, but I couldn't install it. My computer said it was from an unknown manufacturer and it won't open it. It's a MacBook Pro.

I'm so new to all this. To this forum, even to using cpap. Sorry, and thanks for bearing with me.

So Pugsy you mentioned 12 to 6 was too wide a PS for my bipap causing centrals. Do you have any advice about how could i change my settings to sleep better? Or should i just sleep with it as it is and see the data on Sleepy Head? I'm guessing that's what you'll tell me.

Thanks!

You misunderstood. I did NOT say that the PS was too wide and causing centrals. I said it was borderline for maybe making centrals worse. We don't know that you are even having any centrals now.

At this point we have zero idea what your current settings are giving you in the way of results.
You talk about the past centrals but we have nothing to go on in terms of what is happening with the therapy and what is happening now is the most important thing to look at right now.
We don't know if you are even having any centrals now because you don't have the software and can't see the details.

I am sorry but there's nothing for any of us to base any ideas or suggestions on in terms of your therapy or changing the settings. Without knowing what is going on we are really taking wild ass guesses and I don't do that...especially if there is a remote chance of centrals being a factor. It's not in your best interest for us to pluck a number out of the air and suggest you use it.

Heck, for all we know your therapy is doing just fine at the current settings and no changes are warranted.

Figure out some way for us to see those detailed software reports.

JohnSerrano wrote:Hi:


I downloaded Sleepy Head following the instructions, but I couldn't install it. My computer said it was from an unknown manufacturer and it won't open it. It's a MacBook Pro.

Thanks!

I had this same issue recently when I downloaded the newest version of Sleepy Head on my macbook pro- the work around for this, is to go to your system preferences, and click on Security and Privacy, you need to click on the unlock icon on the bottom left corner, then select the Allow Apps downloaded from "Anywhere" to open Sleepy Head- after I open the program, then I switch it back to the default mode of only opening software from Mac App Store and Identified Developers.

If you try to open Sleepy Head first, and then go to system preferences, it will have another choice of allowing you to open Sleepy Head, but it doesn't work- i consulted with Apple Care Technician for advice, he says there is something in the way Sleepy Head is coded that won't allow it to be opened. My apple one to one trainer who I consulted with first seemed to think it should allow the exception, but the Phone Technician, said he could try to trouble shoot it but it could take up to 2 hours and may not resolve the issue. This afternoon, I have an appointment with the Genius Bar to see if they can figure out how to resolve the issue. If there is a resolution, I will post it later today . . .