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[Equipment] newbie, help
#1
I have never posted and need to learn how this works. I was diagnosed with severe sleep apnea last month,[48 per hour]I was put on respironics auto system 7 to 12 pressure, and last night after visit to clinic overnight i was switch to plain cpap machine, pressure 11--I tried it tonight and felt i was having a panic attack---it was horrible> I had 4 hours sleep at the clinic and now can't sleep with this new machine . Canada, Ontario the gov't pays part of the cost of the machine, and one must meet certain criteria to qualify for the auto--you can't even pay the difference and upgrade. [I also have glaucoma/high ocular pressure] and see research saying auto is the best for that. I will be calling the clinic in the morning and making some other arrangements to get an auto back until i see the doctor again on June 9th to review my prescription.] , now the constant setting of 11 on the new cpap today changed--before I have a heart attack...[had high blood pressure, chest pains, etc prior to getting on the auto system last month--all was going well--now this---its going to be a long night--last nights blood pressure went to 173/102-not good at all [it was perfect all this month]Oh-jeez
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#2
Hi Joanster and welcome

Good luck getting your APAP back
If the clinic is not helpful, your doctor should be able to sort it out
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#3
(05-27-2015, 10:47 PM)zonk Wrote: Hi Joanster and welcome

Good luck getting your APAP back
If the clinic is not helpful, your doctor should be able to sort it out

thank you very much. Once the government get involved there are always propblems. In Ontario, Canada they pay a certain amount toward your machine, and you have to take what they "say" you need, based on certain numbers--[mine was 3, and it has to be a 4 for auto ]--you can not even pay the difference to upgrade--I am sure once I see the dr, in two weeks he may be able to get me upgraded to auto again-as I do have glaucoma--i was on a trail with the machine--with setting for 7 to 12==the auto was awesome--i hate this just plain cpap--it horrible after the auto......big difference. I also found research stating auto is far better for anyone with high ocular pressure. One really must do there own research now days. I have sure learned lots from reading this forum. I am just leaning even how it works, postings etc.
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#4
Hi Joan, what exactly do you mean by horrible?

Cannot get enough air? Getting too much air?

It's important because if it's you cannot get enough air, then it could be all you need to do is turn off the ramp. On the other hand if you can't stand the pressure of 11, then you need to discuss with them the proper exhale pressure relief.

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#5
(05-27-2015, 11:52 PM)retired_guy Wrote: Hi Joan, what exactly do you mean by horrible?

Cannot get enough air? Getting too much air?

It's important because if it's you cannot get enough air, then it could be all you need to do is turn off the ramp. On the other hand if you can't stand the pressure of 11, then you need to discuss with them the proper exhale pressure relief.

I was on a trial with a phillips respironics "auto" set from 7 to 12 for one month and the data saw i was running at 11 1/2 over 90% of the time. With about 1 to 1 1/2 eposodes per night. Everything was great. I went back to the sleep clinic on 26th May, and they determined I would be on a set pressure of 11 with a ramp.[ and did not qualify for a auto unit as my numbers had to be over 10--which it was, but from sleeping on my side, to on my back, I hade to have a measurement of 4 --mine was 3, hence no funding toward an auto unit. I have did research, and learned with my high ocular pressure [glaucoma] that is not being treated , and hasn't been for months is now worrisome because cpap raises eye ocular pressure. I found some research I am presently trying to get downloaded and printed [I don't have microsoft office on my computer to read it with] that I need to support my claim for an auto machine. It states auto is best if you have glaucoma or high ocular pressure.

I felt like I was getting too much air staying in my body -I have to have a setting of 11 to control apneas, but without the auto the exhaling is very very different. with the auto it is like you are breathing in and out like normal, without the auto, it is a big big change, one I am not going to risk with my eye pressures. [I feel like a balloon being blown up, and want to let some air out] . My eye dr, last month, told me to call him once I get my cpap issues straightened out, leading me to believe he may not realize how cpap elevates ocular pressure, and I need to be tested more often, or he said after trying for over 2 years and not finding medications that would work, he may do lazer surgery. The last thing I need now is trying to cope with a machine that realize is not the best for anyone with high pressure in there eyes, that is not being treated. [just a regular cpap, not an auto cpap, I know I have to use a machine for life, but want the beat for my eyes] It has been a darn long night. I hope to find some answers today. I want an auto setting like I had , on a trial machine, until I get back to the sleep clinic for the final apt with the dr. there on June 4th. or I will just have to purchase the machine outright and fight over the funding with goverment. You take what they say you need based only on there criteria, [and the sleep clinic dr may very well manage to get me back on the auto and some funding, but in the meantime I am worried going without a machine, and no support from my eye dr. at present. ]. In Canada the autos are not cheap I don't think, but I am not messing with my eyes. Too high of pressure one can risk loosing there sight and never geting back. That in itself is stressful. Its hard to get all the drs. on the same page . let alone understand how one effects the other. My Blood pressure at clinic the other night went to 173/102. due to the stress of it all. It was perfect at home for the last several weeks on the auto cpap machine I had been using. I tested sever apnea running at 48 per hours. down to little over 1 apnea per hour on that trial machine. thank goodness for this board. I swear, more understanding of it all by board members than many in the field. Thanks for your post. and for listening.
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#6
Hi Joanster,
WELCOME! to the forum.!
I'm sorry you are having such a rough time of things and I hope you can get an APAP since you did so much better with it.
Hang in there for more suggestions and answers to your questions and much success to you with getting your problems straightened out.
trish6hundred
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#7
Joanster, I am in Ontario as well. You need to call your DME and tell them the same things you have said here. It sounds like they set up the 2nd machine with slightly different settings of the EPR (exhale pressure relief). As well though, the constant higher pressure at 11 can be hard to get used to initially. Especially if you had been on the lower 7 on an auto.

As well, on your trial, the 90% pressure was 11.5, but your max was 12. Did the pressure ever max out at 12? If so, your top pressure should have been higher than 12, maybe 14 to make sure the hardest events were being treated. That sort of spread (7-13) would call for an auto.

The minimum number should be from when you are side sleeping in the lightest sleep stage, compared to on your back in the deepest (REM) sleep stage. Check with your sleep doctor, to confirm (ahem) if your side sleep numbers were not at stage 1. i.e. then a lower minimum pressure would have been more appropriate. And thus you have the spread.

In Ontario, OHIP requires a certain therapeutic pressure spread before it will pay for an auto. The glaucoma would count as a therapeutic reason to require a PAP to provide as low a pressure as possible, and then to jump to deal with a deep sleep apnea, and then go down again.

Anyways I think you should talk to your DME and check that the EPR is set properly. Then call the eye doc and see if he can make a recommendation for APAP, due to contraindication of high pressures on your glaucoma. The sleep doc can use that as reason for justifying the APAP.
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#8
Joan, if you haven't done it download the clinician manual from the links at the top of the page. Or simply google "remstar pro c flex plus clinician manual" and you should find it in .pdf form.

The difficulty you are describing is, as TR suggested, with an inadequate expiration relief. On your machine that is specified through use of the cflex + menu system. There are several settings available for cflex, and a procedure that allows you to try them out. So do that, and I think you'll get much more comfortable.

Would I rather see you with an "auto" machine? Well, yes, because I tend to think everyone should have those capabilities available to them even if they don't use them all the time. But your machine can accommodate your needs if it is setup properly.
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#9
(05-28-2015, 07:16 AM)Joanster Wrote: I found some research I am presently trying to get downloaded and printed [I don't have microsoft office on my computer to read it with] that I need to support my claim for an auto machine. It states auto is best if you have glaucoma or high ocular pressure.

If they are Microsoft Word (.doc or .docx) try uploading them to Google Drive or Google Docs and it should auto convert them so you can read them. Or if you prefer Microsoft, you can upload them to OneDrive which also has a Word Viewer. You might be restricted from editing to documents, but it sounds like your main focus is being able to read and/or print the documents.
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#10
I certainly understand and sympathize with your plight. I certainly would not risk my eyesight due to bureaucratic BS. If this crap goes on too long for your peace of mind and if you can swing it you might buy your own machine and cut the crap completely. This is the road taken in my case. I purchased a very low time vpap and find it amazingly comfortable to use.
I am Not in your country and system so I have no idea what they might do to you for having the temerity to look out for yourself.
I wish you well!
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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