"please keep me updated about oximeters "
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Ater two+ years AHI and AI still in mild range, 20/6.2
Afer two + years, the last 8 months on BiPap, my average for 6 months is AHI 20 and my AI is 6.2. That is better than the last month averages which are 21.1 and 10.9. This is with routine pressure increases, presently 24/20 with 0.22- 0.0 leakage with a total face mask.
I see the sleep doc August 24 and if numbers haven't improved ask for a manometer check on the machine pressure (should have thought of that a long time ago). Although I just called the DME and he said it's highly unlikely if the machine reports the right pressures that it's malfunctioning. Although I've heard on this forum of this very problem.
I guess my next step, depending on what the doctor says, but I'd like to have an idea of a plan, is an ENT workup (long overdue), and perhaps a cardiac workup.
I missed 19 days of machine use 3 months ago waiting for my badly broken down nose to heal before I discovered the total face mask, but otherwise have been totally compliant. .I plan on trying the cervical collar idea- nothing ventured, nothing gained and it's cheap.
I have gained weight since starting CPAP, but am steadily losing. Plan at the present rate at being at my ideal wight in three months (really motivated). I'm 5'4", 157 lbs.
My AI and AHI are slightly worse than when first diagnosed, but I have gained weight. I still take Nuvigil for EDS.
Do y'all think I'm missing anything? Any thoughts appreciated.
Thanks,
Mary Z.
Views: 442
Replies to This Discussion
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Permalink Reply by Banyon on
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Renee said:Hello Banyon ~
What I think the tech meant by a full face mask, or what you might call a full ski mask, is something made out of fabric that completely covers a person's xPAP mask and face and continues at least around the back of the head - if not entirely covering the top of one's head as well. I picture it to be like a winter time face and head ski cap.
Best,
Renee
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i>
Mary Z said, "Thanks or the advice about googling for the mask, Renee I realized after I read your post that I have just the thing in spandex somewhere with my winter clothes."
Be very careful with that idea!!! If the exhaust ports on the mask get blocked during the night, you could get a dangerous buildup of CO2.
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Be very careful with that idea!!! If the exhaust ports on the mask get blocked during the night, you could get a dangerous buildup of CO2.
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Permalink Reply by Mary Z on
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Rooster, you still there after your night? LOL!
Good idea. As you can see, I am ready to try it tonight.
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Permalink Reply by Rooster on
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OMG! That CO2 buildup is horrible. 5:00 pm. today before I started to become functional after a night of blocking the exhaust ports.
;)
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Your hair got really messed up, too.
Rooster said:OMG! That CO2 buildup is horrible. 5:00 pm. today before I started to become functional after a night of blocking the exhaust ports.
;)
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This situation just gets curiouser and curiouser. I saw the new Doc yesterday and the data sent to him by my last Doc was insufficient for him to get a handle on what was going on. There were small mistakes in the report such as saying I used a nasal mask when I used a FitLife Total Face Mask, and stating that I slept on my back all night, which I don't. Also problems with leads needing to be replaced and the O2 sensor not working (according to the lab the broken O2 sensor was not a problem as they had other ways to get that information. How?). Documentation from office visits and machine downloads was missing.
In any case the new Doc put me down to a pressure of 16/12, much more reasonable than 25/22 especially since the rationale for this, or the pressure was never documented anywhere.
More confusing was the dowload from the machine which stated on only 2 days out of 30 had I used the machine more than 4 hours, though there were over 300 hours documented on the machine. I use the machine all night, every night and typically sleep at least 10-11 hours and still don't want to get up (still take nuvigil for EDS). The usage on the LED screen stated usage 32days/32days. The download also showed no apneas or hypopneas. This would be great, but I don't believe it. If data for RR said 3-12, there had to be events to my way of thinking. I was having 14 events/hour at 24/20 and now at 25/22 I'm down to 0.0?
Last night I slept 6 hours and 45 minutes at 16/12, woke up alert and refreshed- the day will tell if I get sleepy or not later on.
I'll take the machine back to them in two weeks for another download. Will probably have a new sleep study after New Years when insurance will pay for it. The old doc may have been causing central apneas with the high pressures, hence my not wanting to get up in the morning and my hypersomnia.
So essentially, the documentation was so confusing and lacking that the new doc doesn't know what to think and is basically starting from scratch.
Don't get me wrong, I'd be happy with an AI of 0.0, but then why don't I want to get up in the morning and fall asleep early in the day without Nuvigil? Things just don't add up.
Thanks for reading such a confusing mess.
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Mary Z said:This situation just gets curiouser and curiouser. I saw the new Doc yesterday and the data sent to him by my last Doc was insufficient for him to get a handle on what was going on. There were small mistakes in the report such as saying I used a nasal mask when I used a FitLife Total Face Mask, and stating that I slept on my back all night, which I don't. Also problems with leads needing to be replaced and the O2 sensor not working (according to the lab the broken O2 sensor was not a problem as they had other ways to get that information. How?). Documentation from office visits and machine downloads was missing.
Unfortunately this bungling of in-lab sleep studies is seen far too often.
Mary, Glad you felt better this morning at the lower pressure and my prayers are that it is soon discovered that you get excellent treatment at a low pressure.
What is the outlook for getting your own machine and software to do daily monitoring of your therapy?
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My machine is currently a VPAPIII ST-A chosen for me for it's abilty to reach a pressure of 30. Unfortunately the info available from the clinicians menu are only leak, VT, RR, MV, Spont. T and C, and pressure.
I have Rescan 3.11 and the correct cable to download, but it reads 0 AI and 0 AHI. Though this may be true I don't believe (though this is unbelieveable) that this machine, meant primarily as a servo vent, though it will operate in straight CPAP, Spont. with fixed pressures, or timedrespirations, records AI and AHI. Why wouldn't they be available on the clinicians menu? The ResMed Rep said it did, but I think he's looking at another machine- the ST.
The rationale for keeping this machine why we collect more data is that if I'm having central apneas, this would be the machine to use. The new doc thinks I may have been treated for OSA rather than Central SA. It would be great if the machine was right and my event index was 0.0.
Thanks, Banyon
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http://www.apneaboard.com/S9-Data-Management-Guide.pdf
On the details graph are you seeing any flow limitations or snores? Is it showing the leak, minute ventilation and pressure on the detailed graphs? If these numbers are reasonable, you might expect it is reporting the correct AHI. But I, like you, have doubts that a properly working machine will report zero AHI even in someone with a large upper airway.
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Permalink Reply by 99 on
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it is regersting zero because you have not had the machine long enough i would guess you would need a minimum of severn days or perhaps one month to registra
Mary Z said:My machine is currently a VPAPIII ST-A chosen for me for it's abilty to reach a pressure of 30. Unfortunately the info available from the clinicians menu are only leak, VT, RR, MV, Spont. T and C, and pressure.
I have Rescan 3.11 and the correct cable to download, but it reads 0 AI and 0 AHI. Though this may be true I don't believe (though this is unbelieveable) that this machine, meant primarily as a servo vent, though it will operate in straight CPAP, Spont. with fixed pressures, or timedrespirations, records AI and AHI. Why wouldn't they be available on the clinicians menu? The ResMed Rep said it did, but I think he's looking at another machine- the ST.
The rationale for keeping this machine why we collect more data is that if I'm having central apneas, this would be the machine to use. The new doc thinks I may have been treated for OSA rather than Central SA. It would be great if the machine was right and my event index was 0.0.
Thanks, Banyon
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For this particular machine the only data available is Leak, VT, RR, MV, SPONT T & C and Pressure (ResMed VPAPIII ST-A). The software does state that all data are listed, but they aren't available from from every machine . Perhaps the Encore Software is more sophisticated, or I don't understand, in spite of reading the manual (though this is a different animal than an S8)
how to downlad the data. Everything seems reasonable but the AI.
Thanks again, Banyon. And thanks for the linkk. I'm going to re read the cliinicianss manual for the machine and the manual for the 3.11 software.
Banyon said:http://www.apneaboard.com/S9-Data-Management-Guide.pdf
On the details graph are you seeing any flow limitations or snores? Is it showing the leak, minute ventilation and pressure on the detailed graphs? If these numbers are reasonable, you might expect it is reporting the correct AHI. But I, like you, have doubts that a properly working machine will report zero AHI even in someone with a large upper airway.
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Permalink Reply by TorontoCPAPguy on
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Mary Z said:For this particular machine the only data available is Leak, VT, RR, MV, SPONT T & C and Pressure (ResMed VPAPIII ST-A). The software does state that all data are listed, but they aren't available from from every machine . Perhaps the Encore Software is more sophisticated, or I don't understand, in spite of reading the manual (though this is a different animal than an S8)
how to downlad the data. Everything seems reasonable but the AI.
Thanks again, Banyon. And thanks for the linkk. I'm going to re read the cliinicianss manual for the machine and the manual for the 3.11 software.
Banyon said:http://www.apneaboard.com/S9-Data-Management-Guide.pdf
On the details graph are you seeing any flow limitations or snores? Is it showing the leak, minute ventilation and pressure on the detailed graphs? If these numbers are reasonable, you might expect it is reporting the correct AHI. But I, like you, have doubts that a properly working machine will report zero AHI even in someone with a large upper airway.
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