Hide the hammer I'd like to smash it! Feel worse then before I started

[Shastzi]

#1. First of all, MsDIxie;
Your machine is not your enemy. Your Sleep clinic however is.
ANYONE that tells you "You don't have a problem, because you're ok when in our clinic" IS DEMENTED!

Go find another sleep clinic this one is more interested in siphoning your insurance money than they are in solving your problems.

#2. You are flying blind. You need to get ahold of either a System One APAP from Respironics or better yet,
a ResMed S9 Autoset. These will give you a good foundation and then you can use these machines with SleepyHead software so you can get nightly data and be able to *see* what's going wrong and start correcting for it.
There is no magic rocket science going on here. (Even some MD's will admit to this)

I admire your persistance though, that will get you results in this case.

Hang in there and keep in touch!

[trish6hundred]

Hi MsDixie,
EPR is on the Resmed Machines. The equal to it on the Respironics machines is FLEX.
Hope that helps clear up things a bit.
Hang in there.

[MsDixie]

Trish6hundred - thank you. I did look and mine shows c-flex and did find my way into the c- flex trail that's supposed to set the best exhale pressure ( it claims ) it was set on 3 and stayed on it after. I think they RT has locked me out of some of the features. But I'm going to check more into it.

Shastzi - I believe the way I wrote that about the clinic etc was not clear when I went back and read it. I had apneas while on study ( scored moderate ) they had me on a cpap and all the wires.
It was later at my DR appointment the sleep DR told me that I responded well once they upped the pressure and it brought my apnea index to 0 with the cpap. He was pleased and stressed to me that he does not often see one respond so well Which gives me the impression I should be able to be apnea free at home while using my cpap. ( which I'm not )

* My current cpap is a resperonics system one remstar auto A-flex
From another thread I understand I can download & use the software
I've not had time to download but am planning on doing so tomorrow.

* the med supply place did not have my heated hose today I ordered a week ago. One person told me they ordered then another told me there was no such thing as a heated hose. To make it short i had a come apart on them today over this and told them I was changing to another who had time & knowledge to take care of me. That brought results they're having my hose overnighted and I had 3 return calls with apology for taking over a week to get what they said I should have had in two days. It also brought about more discussion.

* I'm rural and go to a satellite clinic where my sleep Dr comes to 2 days week from a larger city
He is in tomorrow so I'm calling the nurse and asking about a pressure adjustment, a follow up appointment and also request he has the RT unlock my machine. I think the A-flex might help me but it seems to be locked out to c-flex.

* if I can clear more time to read and learn i understand I can get into set up and do the unlocking myself. I'm a bit reluctant as the card is read by med supply I'm assuming for compliance for medicare. I'm not sure if the info from the card is passed on to my sleep Dr and if it'd show I changed any of it? One of the reason I thought I'd ask him to have the RT unlock it.

* I did sleep better last night with out as much of a fight Woo-Hoo!
I felt pretty good this morning for first few hours then the old tiredness and irritability kicked back in for rest of day. My AHI reading today was 6.1 so it was much lower than night before :-) But, I want that 0 since the Dr said I had it at the lab , or at least as close as I can get - frankly I just want to feel good longer the a few hours half the day would be a relief.

Thank you & everyone for the encouragement! It really helps!
All the info I am learning from this site and you members is like having you with me. I sound like I know what I'm talking about when I'm talking to them! ha ;-)

I'm determined to make this work for me. " just what makes that little old ant think he'll move that rubber tree plant.... " I've got High Hopes!

[Schnauzers 5]

I think I have a machine like yours. Mine is auto titrating. I tried the A Flex option and I did not like it. I think it made me feel a bit like it was too slow giving me air or some such feeling. I also wonder if your pressure is correct. I like full force right off; no setteling or ramping as they call it. I also could not stand the full face mask or that awful smell of chemicals. Each of us is different, I am female also and I have the swift LT for her. Sometimes my left nostrel get a little tender, but not really sore. Mostly, I do fine. I hope that happens for you soon and it becomes second nature for you. Just part of you sleep ritual. Hang in there.

[FireInCairo]

One of the biggest problems with doctors "prescribing" a setting is that they are just guestimating what your needs are. You need to get into the control settings and up your cpi a bit until you are feeling refreshed and rested each day. They had me on a 10 for years, and it was like spoonfeeding me air. It helped relative to the exhausted state I was in, but it wasn't optimal. Then I found this place and was able to get into the settings of my machine and I raised it up a bit and it was like night and day. I'm now at 10.8 and feeling a lot better. Don't be afraid to raise the pressure some to find what you're needs are.

Also, I tried an "autopap" which was supposed to self-regulate the pressure and it was terrible. It didn't work. It wasn't responsive to my needs. I felt like I was suffocating, and it was making my condition worse. Zone in your optimal setting on your own.

[trish6hundred]

I finally got around to having someone turn off my ramp feature on my machine and it's GREAT. Someday, I'll get bold and have a range of pressures put in my settings, for example, minimum pressure would be 8 and maximum pressure would be 15. My overallpressure that I was titrated at is 10.
But right now, I'm just getting used to having the ramp turned off, (Ha-Ha.)

[TinyL]

Hang in there it looks like you are getting some pretty good advise...I'm a noob so all I can say is keep on tweaking it till it works for you. Good luck!

[John J]

Tez & Trish Thank you both for your replies.

I'm trying to get comfortable I guess, not 100% sure. I've been doing the mask swap for the past week. Partly in determination to keep it on I was pulling mask off mid night so am trying to be mindful to keep one on. I did swap out the swift fx I loved it at first, but then I love all of them when I first try its after a night or two they bother me.
I'm thinking and trying to answer the question 'why' now that you've ask. One reason is I do wake to leaks then am so uncomfortable. Another it seems I'm suffocating - I may be getting a bit claustrophobic not sure. The hose is another I get wound up in it and have draped it over my headboard and also use the attachment on top of the swift mask I use now. I'm waiting on a heated hose to come in in hopes it will help.

Quitting is not an option - I did that 9 yrs ago after losing 30 lbs and declaring myself cured I now know better and that it doesn't work that way. I believe that is a bit of my aggravation also when I was on it years ago I took to it like a duck to water and slept with it for 3 months before getting off track. I guess with all th see new bells and whistles I expected it to be even easier and become Wonder Woman or something....

I've got a problem asking for stuff, and I really hate asking for new masks (but I will ) also is there not like a 30 day period of swapping the mask out then you can't no longer? Seems like I had heard you could swap them as much as you wanted for your first 30 days. I may be wrong about that though.
Again thanks for listening to me whine - it helps! ;-).

Hi there
Well you're NOT whining...I promise. I too am a new CPAP user (since middle of March). I have found some interesting things that might help :

First, it sounds like you have 'air hunger'. If you have a CPAP with C-Flex+ like I do, I actually increased my C-Flex to 3. It makes it much easier to breathe. I know people like the ramp but for me, I felt the air hunger so I now start without a ramp and i get all the air i need (I'm at pressure 10). If you have the setting you should try the higher C-Flex. Also, try preheating your water tank humidifier.

Second, as far as the masks, try and find one that is comfortable and stick with it for a week or so. At first, they all are uncomfortable to some extent till you get used to them. I too tried the Swift FX pillows and I found them uncomfortable. I switched to the Mirage FX and it is better. I like the small nasal masks a lot. However I am going to get fitted for the WISP because it seems to be an improved version of the Mirage and is made by Respironics. It is way less bulky and is really unobtrusive compared to other masks. Please consider a small nasal mask.

I am now loving my CPAP because I feel so much better breathing during the night. I also feel wayyyy less sleepy during the day. It's literally like 'night and day'. Stick with it please. Good luck
:grin:

[John J]

One of the biggest problems with doctors "prescribing" a setting is that they are just guestimating what your needs are. You need to get into the control settings and up your cpi a bit until you are feeling refreshed and rested each day. They had me on a 10 for years, and it was like spoonfeeding me air. It helped relative to the exhausted state I was in, but it wasn't optimal. Then I found this place and was able to get into the settings of my machine and I raised it up a bit and it was like night and day. I'm now at 10.8 and feeling a lot better. Don't be afraid to raise the pressure some to find what you're needs are.

Also, I tried an "autopap" which was supposed to self-regulate the pressure and it was terrible. It didn't work. It wasn't responsive to my needs. I felt like I was suffocating, and it was making my condition worse. Zone in your optimal setting on your own.

Hi Cairo,

I think that if you have a good sleep doc who does a proper titration test, then the doc is doing more than guesstimating. If you read the titration results, they look at your O2 sats and several other factors for each 1 degree of pressure and find your optimum pressure. I really disagree with trying to set your own pressure. IMO it can be dangerous because you are not able to monitor your O2 sats and your events. Overpressure on your CPAP may cause significant decreases in the O2 saturation, increased Apnea or even Central Apnea. There is no substitute for a full sleep titration so I respectfully disagree with deciding on your own optimal setting.

Thanks ...

[JJJ]

... Overpressure on your CPAP may cause significant decreases in the O2 saturation ...

More pressure than is necessary can have lots of unwanted effects, but I don't understand how it could possibly decrease the O2 saturation.