Finally had a PSG instead of a PG and the result shocked me

[mugen4u]

I did a Polygraphy sleep study one year ago and it gave me a AHI of 6.0. Since i feel so sleepy and my life and work suffer i got a CPAP but no matter what i did i just couldn't fall asleep, both facial and nasal pillow masks didn't help. The oscar data told me that the moments i did sleep with it (max 1 hour) my OSA would not go down, but my CSA went up.

Mostly due to the advice of the sleep clinic i quit the trial and went to a shrink and started a depression trial because maybe my symptoms are not due to sleep apnea but depression.

fast forward 9 months later including working 2 days less a week, several shrink sessions which costed me a lot of money and 2 anti depressants later i still felt the same (or maybe a bit worse).

I finally got a polysomnography sleep study, AHI was 8.1 (weird that it was higher then the PG) but about 7.0 were centrale apnea, almost no OSA or HYPO at all. Even UARS was out of the question.

first of all: why did i have to use CPAP if i have mostly CSA? doesn't CPAP only work for OSA or HYPO problems? 
Second of all: in 7 hours sleep i had about 58 moments i had CSA, and i woke up several times that night according to the study and they said i had a restless sleep. Isn't it normal that i feel like this and that it get's worse and worse as the years go on?

Does anyone know if 58 Central Sleep Apnea moments in 7 hours is bad and that this actually does contribute to me feeling like this which get's worse over the years? 

they said AHI of 8.1 is 'not that bad' and only falls under the mild sleep apnea category, my faith in the sleep clinic is dropping fast.

the neurologist is going to call me this Wednesday to discuss the test result, any advice on what i should tell them? 
Second: can 58 CSA moments really cause you to feel so sleepy all day if you have this every day for years? 
Third: i read on doctor google (lol) that CSA mostly happens to people with brain or heart problems, but i never in my life had any of these problems.

thank you so much in advance for your reading/reply.

[Deborah K.]

Folks here could probably help you if you posted a couple of OSCAR charts.

[mugen4u]

I dont have them anymore, that was a year ago after my polygraphy sleep study and CPAP use. I had the polysomnography but they didnt give me the detailed information about it. 

for now i only like to know the answer to these questions if that's possible?

First: the neurologist is going to call me this Wednesday to discuss the test result, any advice on what i should tell them? 
Second: can 58 CSA moments really cause you to feel so sleepy all day if you have this every day for years? 
Third: i read on doctor google (lol) that CSA mostly happens to people with brain or heart problems, but i never in my life had any of these problems.

[Jay51]

I will try my best to help you answer these 3 questions.  If you don't like my answers or someone gives you a better answer, feel free to disregard my answers. 

1.  I would tell the Neurologist as much as possibly about your study.   (If you want to try to get a copy of it and post it here with personal information redacted, we can look at it).  Tell the Neurologist how you feel.  Tell them how you feel after a night's sleep.  

2.  It seems like you have answered this question:  "Since i feel so sleepy and my life and work suffer i got a CPAP but no matter what i did i just couldn't fall asleep, both facial and nasal pillow masks didn't help."   It seems like in your "untreated apnea" state, you are still tired.  A CA can be as bad or worse than obstructive apnea.  It still keeps you from breathing for 10 seconds or more.  Some CA's can last a very long, time, too.  Longer than 10 seconds.  Imagine how your body feels going that long without oxygen. 

3.  Not necessarily.  Most of the CA's we see here are idiopathic:  the origen is unknown.  It is strange to see a sleep study with almost 100% CA's.  I had a home sleep study that showed severe obstructive apnea, but only mild central apnea.  But with the addition of air pressure during my poly, it showed I had twice as many CA's as OA's.  Still some OA's, but the vast majority were CA's.  When you started using your pap machine, it could have caused treatment emergent central apneas.  These are fairly common and go away as a person adapts to therapy.  IMO, the machine they gave you was wrong.  An ASV machine is commonly used to treat central apnea.  VAPS therapy is for more respiratory diseases, etc.  I have both an ASV and this EVO ventilator.  For me, the learning curve to learn to sleep with it was very large.  It took me a lot of time to learn how to both fall asleep with it, and then stay asleep for most of the night using it.  With an ASV, it should give you a 0 AHI pretty much every night you use it.  The downside may be that it is hard to get to sleep with and stay asleep (if you have had trouble with straight cpap).  Your Neurologist can write a prescription for an ASV machine and insurance usually covers it.  

One of the outstanding features of ApneaBoard is the archives system.  If you want to do more research on CA's or ASV, etc. just type that term into the "search" area and it will bring up lots of threads and posts with honest, non- biased opinions and experiences.  Any others questions that come to mind please feel free to ask.  

[Sleepwalking]

mugen, I believe that I’ve had undiagnosed CSA my whole life and now also have OSA. Self diagnosed at this point, but 14 years ago my gf at the time witnessed me stop breathing with no effort. You can click on my name, then click on “find all posts” and see any similarities and if you’re ok with posting your symptoms, please do.

As to what you should say to your neurologist:
List every complaint, especially anything that doctors were not able to find a cause for. 

Overall it does get worse over time but it also can go through cycles. Marijuana makes my CSA worse and has lead to a downward spiral during the 3 periods in my life that I’ve used it. I also believe that you can go for only so long before you’re totally wiped out, and through getting sick or something similar where you get lots of extra rest, you have more time to get some restorative sleep.

I’ve had pain in my lower right abdomen for years, went to the ER for it once, nothing was found, now after a month on CPAP (and O2 because I nearly died from covid) that pain is gone. 

Hope you find a solution soon and feel better.

[DaveL]

You've come to a good place.

The participants here are very helpful.

I'm not familiar with the machine you have. I have a ResMed machine which has an SD card I can remove and read with my computer. Does your machine have one? OSCAR is the program used here. I use OSCAR to read my treatment history to see how I'm doing.  

Reason....I was extremely disappointed with Canadian sleep apnea medical therapy and treatment.  As a participant here I've received great help, and have been directed to the Wiki that explains how to use OSCAR. I can finally manage my treatment. That's what you are doing by asking the questions you asked.

I hope this response helps you. OSCAR and this forum will help you become the best advocate you can have to improve your sleep quality.

DaveL

[gainerfull]

have you had a blood test recently?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6760402/

Low B12 can cause excessive daytime sleepiness

[mugen4u]

thanks for all the information.

i was a heavy marijuana user for 13 years and smoked a lot, my symptoms started years ago slowly and became worse and worse.
I thought my symptoms were caused by smoking weed so i quit but 1.5 years later i feel even worse, i do save a lot more money tho so at least something good came out of it.

My lowenstein prisma app told me that my OSA did not go down but CSA went up, i think it's because CPAP is not good for treating CSA.
i live in the netherlands but what CPAP device supports ASV? in case the neurologist tells me i have to use CPAP again and wants to give me the wrong one?

As for the blood work, i already had 2 advanced blood tests and they all came back negative. I also switched jobs years ago because maybe i was unhappy with that but that also didn't work.

i did have some private issues as in 2 people in my family dying and losing close friends due to issues but my sleepy problems started before that so that also can't be it, i am so sure that it's my sleep even tho nobody believes me and claim it is all in my head.

[Jay51]

You can tell your Neurologist that the Lowenstein Prisma Smart Max (APAP ) did not work for you.  Tell them why it didn't work also.  If it is a Resmed ASV, then OSCAR supports it.  I am not sure if OSCAR supports the Lowenstein.  I am not sure what brand you would most likely end up with there in the Netherlands.

[mugen4u]

i was called by a neurologist but they are not going to treat this any further because a AHI of 8.1 of which most events were central can't be the cause of me feeling so sleepy.
i really don't understand why they are not going to help me, 56 events in 7 hours should be enough to cause my symptoms as far as i know.

They send me to a cardiologist to check my heart, not sure what this has to do with the sleep study result.