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frequent awakenings
#1
Sad 
I was diagnosed with idiopathic Central Sleep Apnea over 2 1/2 years ago. I am using a Bipap with Auto SV Advanced machine. I'm still struggling to get proper sleep. One problem I have is that if and when I do sleep, I wake up every 30 - 75 minutes during the night, every night. I've been through 4 sleep neurologists and the DME provider and cannot get any answers. All of the above seem to circumvent my problem as if they don't have an answer. Does anyone have any thoughts on my sleep situation ?

Thanks,
Dreamless
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#2
Well I wake up about three to four times a night, with the need to urinate. Like you my diagnosis was Central Apnea. I am definitely feeling better after a month on my APAP machine with supplemental oxygen, but it doesn't seem to have affected my frequency of awakening to pee.

My AHI's are nice and low though, usually under 1 and twice I clocked in at zero.

The way I figure it I've had apnea damaging my body for quite a few years, and assuming I am now able to sleep without that particular burden, still my 70 year old body is gong to take time to undo all those years of damage wholly or partly.

Ed Seedhouse
VA7SDH

The above is my opinion.  It is just possible that I may, occasionally, be mistaken.

I am neither a Doctor, nor any other kind of medical professional.

Everything put together sooner or later falls apart.

Your brain is not the boss.
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#3
(02-16-2015, 04:07 PM)Dreamless Wrote: I was diagnosed with idiopathic Central Sleep Apnea over 2 1/2 years ago. I am using a Bipap with Auto SV Advanced machine. I'm still struggling to get proper sleep. One problem I have is that if and when I do sleep, I wake up every 30 - 75 minutes during the night, every night. I've been through 4 sleep neurologists and the DME provider and cannot get any answers. All of the above seem to circumvent my problem as if they don't have an answer. Does anyone have any thoughts on my sleep situation ?

Thanks,
Dreamless

These are very complex problems to work through when complex apnea is involved. The best way to get a handle on what is going on is to learn to use the Sleepyhead software, and get involved in understanding what is working, and not working in your therapy. There are some very well informed members on this forum who can guide your discover and maybe help. It's not medical advise, but you might find what you're looking for.

Sleepyhead software is here: http://sleepfiles.com/SH/index.html?TestingVersions

If you want to post the graphs on the forum, use this tutorial: https://sleep.tnet.com/reference/tips/imgur
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#4
Hi Dreamless,
I don't have any answers, Definitely learn to study your own data if possible. Have you been able to have any other causes of the wakings ruled out? Bladder/kidney/prostate for instance? Would you be a candidate for urinary hormone medication (Desmopressin) to reduce your urinary volume at night? (this medicine has a lot of restrictions/side effects/contraindications etc, but it might be worth speaking to a urologist about) I.e having done all you can (minus reading your data) to get what is going on with you apnea wise, might you be able to fight the battle Nocturia/polyuria wise? Apnea's trigger a whole system to create the end result of nocturia polyuria, In your case it sounds like treating the apnea as best you can, is not treating the nocturia/polyuria. (you may have the first without the second, but my guess is you have both, is your urine yellow or clearer at night and a lot volume wise? if so likely polyuria too) More studies are being done recently to asses the safely of using desmopressin at night to treat the nocturia/polyuria symptoms regardless of cause. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021813/ (I assume you are not elderly, but this is just one of several)

Mainly I wanted to say, as someone who has spent years with that kind of waking torture, I am so sorry. It is really hard. You are doing amazing to keep up with any of your duties, relationships etc. It is like sludging through mud. I expect very few in your world understand this and it has to be hard to hear from other apneacs, that "yup got the machine and I'm a new person" while you press on.

God Bless you dude. Keep on keeping on. I have no doubt you are doing your body good, even though it doesn't give you any satisfaction sleep wise. Keep being a squeeky wheel.

The Manse Hen
A feather ruffler for her own health!
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#5
I agree with Sleeprider. HuhsignBig Grin It sounds, offhand, like your machine may not be set up optimally for you. There are a number of members who have successfully worked their way through the use of ASVs to treat centrals and obstructive apnea effectively. In order to give you any suggestions they will need to see what is happening with your current therapeutic settings. It is also a good idea for you to see these things.

Sleepyhead is a good piece of software for doing just that and it is free. There is also a good tutorial on this board for sleepyhead. If you get involved with the board and continuing posting you will soon be able to post your Sleepyhead charts on the board where some knowledgeable folks will be able to make some suggestions for you.

Stick with it. It will be worth it in the end.

Best Regards,

PaytonA
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#6
(02-16-2015, 04:07 PM)Dreamless Wrote: I was diagnosed with idiopathic Central Sleep Apnea over 2 1/2 years ago. I am using a Bipap with Auto SV Advanced machine. I'm still struggling to get proper sleep. One problem I have is that if and when I do sleep, I wake up every 30 - 75 minutes during the night, every night. I've been through 4 sleep neurologists and the DME provider and cannot get any answers. All of the above seem to circumvent my problem as if they don't have an answer. Does anyone have any thoughts on my sleep situation ?

Thanks,
Dreamless

Hi Dreamless,
If you have been on Bipap for 2 1/2 years, and still wake up that much during the night; then it may be time to search out another doctor. You probably need a complete work up to rule out any other issues. Aside from that, is the machine you are using fully data capable? Does it have an SD card that your can download to the Sleepyhead software.. With this information to look at, your questions may be better answered. Do you know your AHI numbers, and have any of the sleep neurologists asked to see the reports? Even your DME should have been able to download from your machine and send the information to your doctor.
I know it must be frustrating for you not to have any answers, people on this forum really care and will help you if they can.
OpalRose
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#7
Thank you ALL so much for replying !!! I am using a Respironics Bipap ASV Advanced machine with a smartcard and don't have the Infineer smartcard reader (for downloading the data from the card to computer), which I was told is the only card reader that will work with the Respironics machine. I am planning to get one though - - I have been informed that unfortunately it will only work with Encore software. I do have the Encore software downloaded already so its just a matter of getting the Infineer cable/reader.

Again, Thank you.
Dreamless
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#8
(02-16-2015, 04:07 PM)Dreamless Wrote: I was diagnosed with idiopathic Central Sleep Apnea over 2 1/2 years ago. I am using a Bipap with Auto SV Advanced machine. I'm still struggling to get proper sleep. One problem I have is that if and when I do sleep, I wake up every 30 - 75 minutes during the night, every night. I've been through 4 sleep neurologists and the DME provider and cannot get any answers. All of the above seem to circumvent my problem as if they don't have an answer. Does anyone have any thoughts on my sleep situation ?

Thanks,
Dreamless

Hi Dreamless,
While you are waiting for your card reader, my suggestion would be to get into the habit of keeping a journal beside your bed ( I learned that from this site , it gave more clues), and when you wake up each time,write down the time and reason if you know ie bathroom ? dreaming just before ? mask leaking? back sleeping? whatever you notice etc etc and when you start downloading data ,you can crosscheck to glean any info , in addition to all the other info you'll get.
At some point it may be helpful to request copies of your original and titration sleep studies full 5-7 page results, as there's other info in them,plus copies of those 4 sleep neurologists medical notes and copy of DME file , which you may find informative.
Good luck.
3
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