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+--- Thread: Completely new, and in panic mode (/Thread-Completely-new-and-in-panic-mode)
RE: Completely new, and in panic mode - Deborah K. - 06-18-2024
Yeah, finding the best mask is tricky. They started me out with a full-face mask, but it leaked a lot so I decided to try a nasal pillows mask. I found it a lot more comfortable to wear but realized that I had a lot of mouth leaks. I solved those by wearing mouth tape. It sounded like it would be so uncomfortable to use, but for me, it's not at all that way. Lots of folks here who tape like Cover Roll Stretch tape, and it's pretty inexpensive. I like Theraband Kinesiology tape better, as I find it more comfortable, but it does cost more. Folks are different, but I need a 2-inch wide tape that I cut to about 5-1/2 long. Narrower or shorter leaves me with leaks.
So that's what worked for me, but people are very different. Generally speaking, full-face masks leak more than nasal masks, and nasal pillows masks leak the least. A lot of people like the new F-40 full-face mask, as it feels more comfortable and leaks less than most. My husband uses an F&P nasal mask that he likes a lot, but he does have to use mouth tape. Some folks don't mouth leak at all, and some can train themselves to not leak by sucking their tongue so that it holds snugly to the high part of their palate. I tried it, but it didn't work for me. But it does work for some.
Anyway, good luck at finding what works best for you!
RE: Completely new, and in panic mode - Fox66 - 06-18-2024
For various reasons i'm quite certain mouth leaks will be a big issue, but still just feels right to start trying with nasal mask fist and see. The mouth taping thing, very confusing, all "formal" gurus and medical strongly advise against, dangerous, but seems a lot uses this. I would be afraid you would risk suffocating, if nose gets blocked etc. but maybe it's not that attached. Im sure i would have no problem with taping from a confort perspective. Interesting. I guess i'm just so overwhelmed by all thousands of steps (or it feels so looking at this forum), i'm not directly at a point where taking one step at a time, which i get is key, is my strong suit, but we will see.
A great argument for me for nasal, not full, when i was diving, i could never get a mask that fit, due to my very large nose. I saw one of the Youtube guru sleep guys testing various mask, and he looked almost exactly as i did 20 years (and x amount of pounds) ago, same anatomy, and full masks just didn't work with nose and other things. Since i already have a full mask now, i will get a pillow one, the i have both and even if pillow work, might be good if having a cold or something i guess.
Any tips on how to naviga what brand/model of pillow mask ? (realize very individual). I really have no one to vent anything with, especially this CPAP adventure (long, sad story), no partner, nothing, so invaluable, both from a fact, tips perspective, but especially psychological angle, to have this forum. I realize the medical help here is, let's say, very underwhelming, not to say non existent, but if i only can get my head straight, i have enough experience from medical labs, machines for hundred thousands of dollars, looking at charts, flipping settings (from the 90s), but, again, now, currently, i'm kind of a shell of my former self. Again, amazed and overwhelmed by the support here, really amazing !
RE: Completely new, and in panic mode - UnicornRider - 06-18-2024
You are in good hands, with the members of this forum.
Everything you are experiencing is not out of the ordinary. It is quite common for members to have been through very similar situations. As Deborah K. said the ResMed is a preferred machine. The Philips Respironics algorithm is slower, almost sluggish in comparison to the Resmed machines. The ResMed machines offer more tuning, tweeking and timing functions to work with, in personalizing the function of the machine to the individuals needs.
The Lowenstein machines are gaining respect, I have no working knowledge of these machines. But the forum has members who have in-depth knowledge with these machines.
As OpalRose says read some of the forum threads, check out the Wiki, read OSCAR - The Guide.
https://www.apneaboard.com/wiki/index.php/OSCAR_-_The_Guide
There are a lot of new words, key phrases and tricky concepts to assimilate. Do not let it overwhelm you, we have all been where you are, we were able to overcome the obstacles and now are able to pay it back by guiding others on this journey they are about to undertake. You have the benefit of a background that will enable you to grasp the knowledge faster and easier than most who come here.
I look forward to working with you on your new adventure.
RE: Completely new, and in panic mode - Dormeo - 06-18-2024
Some random ideas:
* Watch a couple of videos to learn the best way to adjust the fit of the F&P mask you now have.
* Try a ResMed P10 pillow mask. Be sure to get it with a fit pack (S, M, L pillows). It's very minimalist.
* Set your machine up outside your bedroom during the day or evening and use it while you're watching TV, reading, or doing stuff with your devices. This will help you get used to all the new sensations.
* Revise your profile to show your new machine and your current mask.
* If you have a laptop or desktop computer, download Oscar. Get an SD card reader if your computer doesn't have an SD slot.
RE: Completely new, and in panic mode - Fox66 - 06-18-2024
Excellent advise, both two previous posts, thanks! I guess my most immediate struggles are not really the technical, I'm sure i will get that, but the mental game. I have such hard time with way simpler things, getting started, taking small steps etc. since many years back that this feels so impossible. I already have all kind of professional help with things, but have just been getting worse so this diagnosis and all it encompasee just feels so mush. I guess having this undiagnosed for, at least 20, more likely 30 years, a couple of weeks here and there doesn't matter mush, but i will have to try doing things a bit different and different pace than most here, somehow. I doesn't help that despite working 35 years with numbers, measurements etc. I just really hate the idea of being dependent of technology (instead of being grateful, as one should, for the advancements and effect). Well, this is not a mental health forum, but I will not "give up" or just postpone indefinitely to start trying, just so much practical, logistically that is in chaos right now. It's hard to set up a new bed (which i really need), taking all these steps, and more in the middle of full panic attacks, and worse. It's a mess and i literary have absolutely no support, in real life, but thanks only to this forum, i have a glimmer of hope of reaching my goal, of, more or less, being able to have things working so well as to not needing to "think" about it. Some threads here it seems like half time job for month, seeking some perfection, which i great for them, but i just simple could not be that invested. I realize many cases where things work out easier might not seek as much help. Well hope to order pillow mask, some neck collar and some other stuff, put my bed, mattress, special side sleeping pillow etc. up, and then, follow all your advice, to get accustomed, Oscar etc. My way of being invested and take ownership of this, just doesn't work like most (I only managed to lose 90 pounds, i 3.5 month, doing it in a very strange way, so there is examples). I guess my first goal should be able to breath reasonably awake with mask and pressure, and i guess accept the entire thing. I have not really had anyone to even went the diagnosis, all the fears when realizing what OSA is etc. so it's just like it became reality yesterday at mask fitting. Well, i have a tendency to write long essays, this will change if/when i get into action mode soon, i hope. Again, thanks a lot, it means a lot really, and i would not even believe possible to work already now without this forum, that's for sure. Midnight where i am so i guess some "sleeping" is due.
RE: Completely new, and in panic mode - Dormeo - 06-18-2024
How about this for one day:
VERY first step. Hold the mask up to your face without using the straps. Just see what it feels like.
THEN watch this video: https://www.youtube.com/watch?v=-dcAsEl-Ezg
And THEN: take your mask apart and put it back together again.
FINALLY, unhook the clips, put the mask on your head, fasten the clips, and adjust the straps. You want the mask to make good contact with your face but you don't want it to feel tight. Now take it back off, using those little clip connectors on either side at the front.
Just do that. Nothing more. Don't connect the mask to the machine. Don't fret about a longer to-do list. When you've done this, let us know and we can suggest the next thing.
RE: Completely new, and in panic mode - Fox66 - 06-18-2024
Amazing, excellent idea, and identical to what i used teaching diving in the olden days, to fit/get used to diving masks. I guess i just have to remember my old life when being a diving instructor then :-). I now have a full mask, one hybrid mouth and nose cradle so i think i will just buy a basal pillow mask also, then i kind of have some to test out. Based on all tips and advice i have gotten here so far, i feel i would like to try the nasal pillow one first, but again, as soon as i have fixed other "logistics" to my sleeping situation, i will definitely start the from start to finish tread and step one will be as you said, for sure. I don't think the mask itself, skin irritation issues like that is the big thing, i guess is hard via this forum to actually understand how strange the pressure "should feel", but thats step two i guess. I will ASAP buy a good side sleeping pillow, some neck collar (I really certain i have severe neck tucking/positional issues) etc also. Well well, amazed with the support on this forum, really makes you feel a bit hopeful, not alone, which is a big thing for me, especially with the completely useless healthcare over here.
Having a background in innovation, I just can´t stop thinking of devices/products i don´t get someone have not invented yet, for example the mouth leaking/chin strap/taping issues, why no invent something strong seal enough for pressure keeping mouth closed, but like "releases" if needed, not to suffocate if nose blocked etc. As strange as it sound, this "distractions" help me with the "steps" i think. Would be cool with something adapting, like closes with little to no forse, but increase when more pressure etc. Well, maybe more on that later (I have some concrete ideas how to do also), at least an initial concept.
RE: Completely new, and in panic mode - Fox66 - 06-21-2024
(06-18-2024, 04:39 PM)Dormeo Wrote: Some random ideas:
* Watch a couple of videos to learn the best way to adjust the fit of the F&P mask you now have.
* Try a ResMed P10 pillow mask. Be sure to get it with a fit pack (S, M, L pillows). It's very minimalist.
* Set your machine up outside your bedroom during the day or evening and use it while you're watching TV, reading, or doing stuff with your devices. This will help you get used to all the new sensations.
* Revise your profile to show your new machine and your current mask.
* If you have a laptop or desktop computer, download Oscar. Get an SD card reader if your computer doesn't have an SD slot.
Your steps sounds excellent! Will not overuse quotes, but just a question. If starting with nasal, is not the mouth leaking an issue to also address, or is that more of a step two, after at least been able to tolerate pressure, sleep with it etc. I have seen so much of collars, straps, and all the taping stuff, don't think i will have any mechanical issues trying all of this, but... I don't seem to find anything here about the risks of taping. I get that you, likely, in the event of power och machine failure, probably would wake up and rip of the tape, and none of all the experienced tapers in this forum seem to have any fears, but what about coughing up stuff, throwing up etc. any risks. I´m asking because this is the only thing i'm worried about, and seems obvious taping will be needed (based on my anatomy, dropping jaw etc.).
Any clarifications on possible risks of taping, i'm sure i would have no issues with claustrophobia, skin sensitivity etc. it's all about dying in my sleep, that would not be nice ;-)
RE: Completely new, and in panic mode - Dormeo - 06-21-2024
As you indicate, the two potential dangers of taping are inhaling vomitus and failing to remove the tape if there's a power outage.
I just don't worry about the first one. I have never vomited in my sleep, and it has been decades since I vomited at night. If I vomit, I have plenty of warnings that would wake me up if I were asleep -- especially nausea or stomach pain. If you decide to try tape, you could start with Somnifix. It's a bit pricey, but you would probably find, as I do, that it's easy to use just your jaw muscles to open your mouth.
Re the second concern: I plugged a Reliance brand circuit alarm into an outlet on the same circuit as my machine. It works, and it definitely wakes me up when the power goes out.
RE: Completely new, and in panic mode - Fox66 - 06-21-2024
Aha, i get it, but.... what if, the I guess very, very unlikely event of the actual machine dying/malfunction ? Would be cool with something to strap on, with some kind of pressure sensor, that would pop open, when no pressure in mouth, or... other ideas (would be cool with some pressure sensor/alarm in the air providing hose also, could be another money maker for CPAP companies ;-), this would actually be feasible i think, you would need to alarm for power, pressure loss would cover all scenarios) i have, but i guess i'm just strange. Obviously there is hundreds, or thousands here in this forum taping every night, and it´seems all are fine. I´m just to paranoid i guess, thanks for the reply. I have a post on where to discuss various product ideas (not existing products), innovations etc. It's my way of dealing with stress/getting friendly with this adventure, but.... i realize, just need to jump into the actual therapy now, and your steps seem great.