Sudden extreme rise in AHI

I had registered and used this forum a few years ago when I first received my CPAP. Haven't been on in awhile (changed emails, so had to reregister as I coudln't remember my previous login.)

My CPAP is a Respironics and I use a WISP mask. From the time I received the CPAP my numbers have been very good. I didn't have a very high number during the sleep study, I believe it was around 20, second night of the study, with the CPAP, it had decreased to 2.1. And ever since I first used the CPAP my numbers have been low, ranging from .5 to 3, sometimes 4. I felt good and had no issues sleeping with it. I'm a backsleeper, and I sleep on a wedge at about a 30 degree angle.

Then about a month ago, my AHI numbers suddenly jumped. Not only did they jump but the mask became very disruptive and I would wake many times and feel like I was not getting enough air. I ordered a new WISP mask, but that didn't help. My numbers were in the mid 20's to the high 30's. I sent my card in to be read, and the info was sent to the CPAP doc.

I have MS and about this same time some severe MS issues distracted me from the CPAP problems, and I decided to quit using it until I heard from the doctor. So after a month of dealing with the MS "stuff" I was back on an even keel, and I realized I had never heard from the doctor. I put a call in yesterday and the nurse had not shown the report to the doctor yet (so it had been sitting there a month...unbelievable), but she said it looked like I was having a lot of leaks. I didn't feel like I was having any leaks, at least not in the mask or around the mask. I can usually hear or feel a leak and I had not been aware of one. Also, in previous use, I had never had the "air hunger" issue while I was using the CPAP, so the nurse wasn't sure about that and said she'd give me a call back, but to try the mask again being extra careful to note for leaks.

Last night I put it on, I am sure there were no leaks, I was not breathing through my mouth, it wasn't dry at all and I wear a cervical collar that also prevents me from opening my mouth, and after 2 hours of fitful sleep, just like had happened before, I got up and checked the AHI ... my number was 68. I took the mask off, and slept the rest of the night with no issues of "air hunger" or constant waking I work from home and while I was sitting here this morning, I put the mask and CPAP unit on until I got the "needing air" feeling, then I checked the numbers...I had had it on for .2 of an hour, so 12 minutes, and my AHI was 10.

I now have another call into the doctor to see what should happen...and that's why I've logged in to ask your advice about what should happen...hope that sentence makes sense Can these machines calibration information go kaput...could this be a machine malfunction? The medical supply company that manages the CPAP are awful. I never get to talk to a "real person"...if you leave a message for 4 or 5 days in a row, you might be lucky enough to get a call out of them, so I haven't called them, I'm waiting on the doctor's call.

Thanks for listening, just wondering if this scenario of a sudden, high, increase in numbers had happened to anyone else.

Hi - it would be so helpful if you'd download (for free - see Pugsy's sig. lines) and use the Sleepyhead software (good for Macs as well), posting a night's graphs via e.g. Photobucket with a link here, so that we can see what's going on. You said you've had MS issues recently and that could certainly affect things, depending on whether there's any respiratory or neuro. related ones. If you do that, you'll get lots of help here. Or is there a reason you don't want to or can't?

Exactly which model machine are you using?
And are you getting the AHI off the LCD screen or using the software?
If unsure about the model number it should be a 3 digit number on the bottom of the blower unit. Might have DS or REF in front or behind it.
Oh ..what pressure are you using?

Thanks for the replies. I"m working right now, but when I get done, I'll download the software and try to post the info. Recently I only have last night, and I wore it about 2 hours...and then the few minutes I wore it this morning. But maybe I can go back and capture the charts for the days I was getting 38 AHI etc. There again, I never wore it long because I'd give up after a couple hours. Such a difference for me because it was so easy for so long, and I never had an issue wearing the headgear, or feeling like I wanted to take it off until the sudden increase in my AHI numbers.

As to the type of machine, looks like it says REF 560P. I've never attempted to use the software, so I'm reading the AHI off the LCD screen. My pressure is 9.

As to the MS, hadn't thought about that connection, but they believe my tongue is the issue that causes my apnea. It's the obstruction because it's very spastic,
and I don't have much muscle control over it, i.e. I can't stick my tongue out, it sort of lives in the back of my mouth and to one side. Plus there's a lot of muscle atrophy in one side of my neck and if I turn my head to the left I cannot breath through my nose or mouth. My MS issues this past month had to do with extreme spastiscity in my legs. Maybe my tongue is more spastic than normal...who knows, no way to really measure it.

I'll try to download the software and post more info later.

As your ms progresses you'll need a change in modality, ie bipap, bipap st or trilogy. You will not be able to go by ahi as you no longer will be treating just the apnea portion of you.

Sorry it took me so long to get back and reply. I did download the software, but wasn't real sure about accessing the data. I intended to reread the instruction thread but
received a call from my DME folks and so I went off to see them. They printed out all the charts and data, and the problem isn't OSA, my problem is Central Sleep Apnea, more than likely due to the MS. I do have a rather large leasion in my brainstem that messes with my heart rate and BP, so I guess it's decided to mess up my respiration too.

I have an appt. with the Sleep Disorder Dr. The respiratory therapist said I'll need a new machine a BiPap with auto SV.

The last few nights I wore the CPAP my AHI was around 52 total, CSA was 44. I would wake up so often that I could only leave the machine on for a few hours.

So hopefully the Sleep Doc will agree with the Respiratory Therapist and a new machine will help me sleep better.

This is a question I thought of, now that I know I'm have central apnea problems, can there be times during the day when the brain signal doesn't get through
and you quit breathing. I've had episodes during the day, when I'm not aware that anything has changed in my respiration, but then I'll suddenly take this big
gasp of air. It always surprises me when it happens.

Thanks again to those of you who replied so quickly to my original questions, and I apologize for not updating the status for those who asked me questions.

What you describe about daytime breathing is not unusual at all, but I think in your case, it's probably more relevant because of your condition. But how you breathe when asleep is not the same as what happens during the day for anyone, and you can't, for instance, use the machine while awake to test yourself in some way as it won't register stats at all the same as it would when you're asleep. I wouldn't worry about 'forgetting' to breathe when awake unless it becomes a real issue - and I don't mean one where you become 'neurotically' watchful of your breathing, too conscious of it, because that only leads to high anxiety and trouble!

Julie wrote:What you describe about daytime breathing is not unusual at all, but I think in your case, it's probably more relevant because of your condition. But how you breathe when asleep is not the same as what happens during the day for anyone, and you can't, for instance, use the machine while awake to test yourself in some way as it won't register stats at all the same as it would when you're asleep. I wouldn't worry about 'forgetting' to breathe when awake unless it becomes a real issue - and I don't mean one where you become 'neurotically' watchful of your breathing, too conscious of it, because that only leads to high anxiety and trouble!

Thanks for your explanation. And thanks for the warning about "focusing" on any one symptoms, i.e. breathing, etc. I've found that the brain has the ability to handle a symptom as if it was background noise. If you stop and think about it, it's there, but if you don't focus in on it, you don't really notice it. My MS, along with "normal" symtpoms, seems to like to mess with my autonomic functions...this is the 4th autonomic function that's been directly affected. I find my brain has gotten skilled at dismissing, or ignoring, symptoms. Neurosis is one thing I'd like to stay away from. Thanks again for the info.

You sound like a smart person in touch with themselves and their problems. You obviously aren't in the same position most would be who don't have MS, and I hope you don't think I was suggesting you're neurotic at all, only that people who are otherwise 'well' can get fixated on something - because they are generally anxious - to the point of needing help, and I wouldn't have wanted to see you get stuck there. However you know yourself well and have legitimate issues, so certainly don't ignore what really does need addressing if it becomes a problem or part of your MS 'pattern'. Only you (and your doctor) can know that of course.

Hi,

I finally was seen by the Sleep Doc on Friday, and he says I need to change to BiPap. But I need to ask a question. I tried to get the answer from him, but there is a pretty significant language barrier, and after asking the question three times, and still not understanding his explanation, or maybe he didn't understand my question, I gave up. I've been poking around this forum looking for the answer, but since I'm not even sure what the question is , my searching hasn't turned up anything.

He told me this would have to be approved by my insurance company because of the extra cost involved in BiPap, and that the insurance company might need another Sleep Study to verify the increased CSA, but probably not considering the evidence he had on the reports and the fact that I have MS, and a lesion in my medulla which would explain the CSA. So up to that point we were good. But then he told me changing over to BiPap could be done with my existing machine. That's where he lost me because I tried to ask, "If I'm using the same machine, why does it cost more, and why the approval from the insurance company." And the answer was inevitably "Because BiPap costs more." and then I'd say, "You mean I'll be using the same machine?" and he'd say, "Yes"...and so it went for about three rounds. He wrote a prescription to be sent to the DME, so I'll give them a call next week, but figured there's probably an easy explanation so I came to the forum.

I use a Phillips Respironics System One Remstar Auto A Flex (the number on the bottom is 560P.)

So my questions are: 1. Can this machine be programmed for BiPap 2. And if so, why is there extra cost involved, and why the need for proof for the insurance company.

The model 560 PR S1 machine can't be made to function like a BiPap. Especially the BiPap that is used to treat CSA.
A totally different model is needed. There's no way for the DME to make the 560 do the things BiPaps do and there's not any sort of firmware or software upgrade available to do it.
But it's easy to switch them out and use the existing humidifier.

The Bilevel pressure machines used to treat centrals are maybe 4 or 5 times more expensive than your APAP machine was.
That's why insurance companies want proof of need....to save the big bucks.

maybe he meant the same brand of machine.

Thanks for the replies. Maybe that is what he meant that the humidifier part can still be used.

I'll find out soon enough when I speak to the DME folks next week.

I was just curious to know if machines were convertible. Obviously I misunderstood what he was saying.