bipap newbie – exhausted, desparate, hopeful
Question:
Uh, that should have been "cataplexy-myoclonus" – rolling between being totally limp (but awake) and jittering all over (great fun…;-) — DR – Hide quoted text — Show quoted text -"David Ruether" <r…@no-junk.cornell.edu> wrote in message news:OJXIb.8209$x34.1331@nwrdny02.gnilink.net… > I may be alone in this, and my pressure is low, but I like my > humidifier without heat (it is designed to force the air over a long > water passage, so it adds some humidity without heat). With > a good fit of the mask (and my mouth closed…;-), this works > well for me (at a pressure of "6"), though with higher pressures, > poor mask sealing, or open mouth, drying may be more of > a problem (I live in the winter-north, with the room temperature > around 68-72, and humidity well under 30%). I find the CPAP > keeps my air passages free of the usual "glop" and "post nasal > gush", so I’m happy with it. Now, if only I could wake up…;-) > (It’s been a rough few hours with "catalepsy-myoclonus", and > I’m getting going by writing this…;-) > — > David Ruether > r…@cornell.edu > http://www.ferrario.com/ruether
Response:
"jkhart" <jkh…@iolfl.com> wrote in message news:eddf325b.0401010500.3300f813@posting.google.com… > HAPPY NEW YEAR! > Victor Radin <vradinNOS…@NOSPAMameritech.net> wrote in message <news:MPG.1a5cc16d9e49a1bb989827@news.chi.sbcglobal.net>…
[...] > If you don’t have a heated humidifier, > > get one. Beg, borrow, steal it- demand one from your doc. Then drape > > your hose to avoid rainout and a wet face (see the archives for > > rainout). > In addition to blowing off the ramp feature, I had had hated the > heated humidifier when I went for my sleep study. You are making me > wonder if I should give that another try too. It felt like warm muggy > stuffy air and not like breathing in nice cool fresh air so they > turned off the heat for me. I have a humidifier but it is not heated. > I live in Florida and keep my house 77deg +. Do you think it is > really worth having heated humidifier? I realize the cold might make > it more worthwhile, but if I didn’t have a cold?
[...] I may be alone in this, and my pressure is low, but I like my humidifier without heat (it is designed to force the air over a long water passage, so it adds some humidity without heat). With a good fit of the mask (and my mouth closed…;-), this works well for me (at a pressure of "6"), though with higher pressures, poor mask sealing, or open mouth, drying may be more of a problem (I live in the winter-north, with the room temperature around 68-72, and humidity well under 30%). I find the CPAP keeps my air passages free of the usual "glop" and "post nasal gush", so I’m happy with it. Now, if only I could wake up…;-) (It’s been a rough few hours with "catalepsy-myoclonus", and I’m getting going by writing this…;-) — David Ruether r…@cornell.edu http://www.ferrario.com/ruether
Response:
HAPPY NEW YEAR! Victor Radin <vradinNOS…@NOSPAMameritech.net> wrote in message <news:MPG.1a5cc16d9e49a1bb989827@news.chi.sbcglobal.net>… > [snip]… You should have some sort of ramp feature- make sure you use > it. ALWAYS. Mine was set for 10 minutes.
Well it seems obvious now! THe ramp helped a lot. When I first had tried the ramp feature, I didn’t like it, because if felt like I was not getting any air in so I had ramping off til now. I gave it a good shot last night and there is no obvious cut off of pressure when ramping up like there is at full force and so it really did help me to get to sleep – everytime I woke up I hit the box to ramp again. That was my best night sleep on this box yet! I have more mouth breathing than I would have without the cold I think but definitely progress and I can live with the device til Monday when my DME fixes my settings. THANKS for the advice. If you don’t have a heated humidifier, > get one. Beg, borrow, steal it- demand one from your doc. Then drape > your hose to avoid rainout and a wet face (see the archives for > rainout).
In addition to blowing off the ramp feature, I had had hated the heated humidifier when I went for my sleep study. You are making me wonder if I should give that another try too. It felt like warm muggy stuffy air and not like breathing in nice cool fresh air so they turned off the heat for me. I have a humidifier but it is not heated. I live in Florida and keep my house 77deg +. Do you think it is really worth having heated humidifier? I realize the cold might make it more worthwhile, but if I didn’t have a cold? Vic, your input has really helped me and I appreciate your posting. -jenny
Response:
> I started with a cpap device but was puffing and it wasn’t working so > my doctor (who is terrific by the way) put me on a bipap device – I > have had it less than a week and, unlike the cpap which I really > didn’t mind -this device has been horrible so far. When I try to > take a nice deep breath, the pressure cuts off. I have to really work > to ‘breathe past it’. Once I am asleep, that doesn’t bother me, but I > have a very hard time getting to sleep with it.
try to be as relaxed as you can before you turn on the machine ready to go to sleep. After you get into bed, make sure the machine is set up ready to go, then relax before putting the mask on…… being relaxed will help you breathe more naturally which i think (though i have no first hand experience with bi-pap) will help. There are also some other general useful hints & tips you may find helpful at http://talhost.net/sleep/cpap.htm — Beth in Australia (I am not a medical professional and anything stated in my posts is my opinion only unless specified otherwise) =================== FAQ for alt.support.sleep-disorder can be found here http://talhost.net/sleep Newsgroup Archives http://talhost.net/sleep/archives.htm this site is a work in progress – feel free to submit info/articles Remove my name to reply
Response:
In article <eddf325b.0312310850.5c8b6…@posting.google.com>, jkh…@iolfl.com says… > This is my first nntp post – Desparation has driven me to it and I am > thrilled to have found this group. I have enjoyed reading the posts > and it has given me hope and alleviated much of my discouragement with > the difficulties in getting used to these devices.
<<snip BiPAP tales of woe>> > I think once I get to sleep, that I will sleep better with this gear > but it is so hard go get to sleep! Thanks to anybody who can post any > help and thanks for the hope your threads are providing! :-)
Can’t help with the reprogramming, I used a different machine until I got the trach. A couple of things that helped me when I started on BiPAP… You should have some sort of ramp feature- make sure you use it. ALWAYS. Mine was set for 10 minutes. That gave me sufficient time to fall asleep without the high pressure air forced into my lungs. Heated humidifier, and hose management. If you don’t have a heated humidifier, get one. Beg, borrow, steal it- demand one from your doc. Then drape your hose to avoid rainout and a wet face (see the archives for rainout). While using the BiPAP, whenever I was feeling congested, I’d put a dab of vick’s vapo-rub on and just under my nose- where the mask wouldn’t touch it. There’s also a liquid Vick’s to put into a humidifier. I used ONE DROP- ONE SINGLE, LONELY, MINISCULE, NO MORE EVER OR ELSE DROP, in about a pint of distilled water. Worked for me, but be careful about cleaning everything the morning after. Hot wash and HOTTER rinse everything in vinegar solution. Hope this helps, hang in and keep trying… it gets better and easier with time. /Vic
Response:
I can’t tell you how to change anything on your VPAP III- I’m just a couple of weeks into using a VPAP III STA myself. I did have to work with my DME to get the setting right for IPAP and EPAP length and rate of change…it is much more then the titration numbers the sleep lab gives you. My DME spent nearly an hour working on getting my setting right but we also had to work on making sure it was giving me the right breath in timed mode when I forget to breath so it took longer (I have central sleep apnea). Also make sure once your DME figures out the right settings that they document them in your chart. I had a brand new machine…only 12 hours on it…malfunction so I am on my second machine already. I’m still trying out this machine to see if it is the one for me. I am lucky that I have an older style Respironics BiPAP ST/D (less then 30 hours when I got it) for a back up. Its funny that it has much less bells and whistles but it seems to match my breath much better then the VPAP iii ST. With the respironics all there is to set is titration rate (12/7) with backup rate of 6- everything else is automatic. Good luck, Christine
Response:
This is my first nntp post – Desparation has driven me to it and I am thrilled to have found this group. I have enjoyed reading the posts and it has given me hope and alleviated much of my discouragement with the difficulties in getting used to these devices. I started with a cpap device but was puffing and it wasn’t working so my doctor (who is terrific by the way) put me on a bipap device – I have had it less than a week and, unlike the cpap which I really didn’t mind -this device has been horrible so far. When I try to take a nice deep breath, the pressure cuts off. I have to really work to ‘breathe past it’. Once I am asleep, that doesn’t bother me, but I have a very hard time getting to sleep with it. I have a ResMed VPAP III and know there is an IPAP MAX setting but don’t know how to break in to the thing to program it. The DMEs are not coming til next Monday and my DR is out for the holidays. I was irked that they would not walk through the setting on the phone (how hard can it be?) I tried all the button combinations when powering on like one of the post mentions and while I found efficiency data, I did not find a programming menu. Can anybody give me any hints on how to change my IPAP MAX setting to the full 3 seconds? Secondly, I am reading with surprise that the CPAP/BIPAPS help when you all have colds – You all talk about ‘blowing’ the cold away. I am afraid it will push all that gunk up in to my sinuses or chest. I wore it when the cold was coming on and woke up with such an intense headache I hesitate to use it again. When my nose is stopped, I found myself holding my breathe alot with the bipap. How do you use a bipap when you nose is just totally all stopped up? (Part of my difficulty is that I am limited in cold medicines due to hypothyroidism). I think once I get to sleep, that I will sleep better with this gear but it is so hard go get to sleep! Thanks to anybody who can post any help and thanks for the hope your threads are providing! :-)
