Cecile-
I understand totally.
I've been on cpap for a year and a half now, and am VERY motivated and compliant, but--- it's not that easy.
 When you have to go through so much to get a good night's sleep, plus looking like you're on life support, and then still wake up feeling horrible- you have a right to rant. You have to be careful who the rantee is, because some people (Who may sleep like babies) will never get it. Others are just giving you tough love, have been there,  and genuinely want to help.
Tough love doesn't work on everyone, because that's not what they really need- just acknowledgment and  understanding. One very good friend said I needed to develop a better attitude and take more naps. This is a person who falls asleep as soon as she hits a chair.
 I have a good attitude when I get a good night's sleep and can think the next day. My masks all have had leak problems, and I have to keep trying new ones, Thank God the new therapist at the med. supply place is very understanding, and rants about the management not keeping a larger variety of masks in stock for people to try, instead of going through the ordering process only to have the mask not fit right.


_________________
Respronics Remstar Pro M Series
Swift Mirage Nasal Pillows
Pressure 13
now trying Resmed Quattro full face mask (leaves dents)
opti life comfort cushion (Will return- leaks)
Swift LT -(This may be the one.)

Ceclie, what CPAP are you currently using? I assume your "dealer" has checked its pressure output to be sure it is still calibrated correctly? "They" recommend checking calibration once a year. I know, it seems like too much coincidence given the damage to the mask cushion. But it shouldn't have cost anything to check that out.

Do you have to buy everything out of pocket or pay a large copay for any new equipment you buy? Has your supplier tried giving you an entirely new and complete Activa as well as the others masks you've mentioned?

I know you are exhausted and irritated. I was an absolute WITCH my first 30 nights on CPAP I had such a rough time of it. And those 30 nights were on top of two titration studies in which I only slept 42 minutes out of six hours of bedtime and 98 minutes out of six hours bedtime. In additon to which my sheister DME supplier tried to foist off a bottom of the line CPAP instead of the fully data capble one I was supposed to get. Heck, I hated to whole world and everyone in it!

Have you tried the mask fitting tips at the top of this forum? Tried shifting the headgear on your head a little to the left, to the right, up or down? Have you tried taking that new cushion off the Activa and putting it back on? Has your supplier tried to do that? Have you/they closely followed the instructions? I know, I know, bear w/me but I'm not there w/you and have no idea what you have and haven't tried and once in a while even the best of us overlook the obvious.  



Last edited by CrohnieToo on Sun Jul 20, 2008 3:46 pm; edited 1 time in total
_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Cecile wrote:

... this eye leak, which is not apparent at 7cm, starts to blow air as it ramps up and wakes me. ...

I totally understand about not being able to tolerate the leaks around the eyes. I absolutely will NOT tolerate leaks around my eyes. I've had catract surgery on one eye and glaucoma in that eye as well. I'm NOT willing to risk damage to that eye due to CPAP pressure blowing into it.

That being said. Do you really need the Ramp feature after three years on CPAP? What is your pressure setting? Have you fitted your Activa w/the new cushion at your SET pressure or AT LEAST 10 cms? Any mask should be fitted w/CPAP on at 10 cms or your set pressure WHICHEVER IS HIGHER.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

I feel your pain Cecile.  I tried nine masks before finding the right one for me.  Someone posted hereon that a little water soluble gel (like K-Y) around the silicone of your cushion helps to keep the seal--not too much or it will feel wet.    It does work for me.  I had a little trouble originally near my eyes but with my new mask and the gel, I'm doing much better.


_________________

CLICK HERE FOR MORE INFO~ http://tinyurl.com/69q52a


ResMed S8 Elite, F&P Flexifit 406, Optilife
AHI 54/hr, Pressure 8, desat. 73

i have a few ideas to try, seeing the therapist tomorrow on a rare day off.  the previous therapist never followed me up, chalk it down to experience.  i am using a remstar c-flex something or other, don't have data capability fitted...that doesn't seem to be the norm here anyway.  all masks tried were at full pressure, and all leaked.  this is not the same company who sold me my machine...i am assuming the machine is working fine, and i am not in a financial position to buy a new one at the moment.  i use the ramp because it's really difficult to breathe while still awake on 15, so i always start on 7.  all accessories are completely out of pocket, one new machine every three years if needed and my particular policy has a miserable $500 only payable on purchase.  this is australian dollars too, average machine i think over $1500 plus plus plus.  i have shifted headgear, which never fit properly anyway from day 1, moved the mask around on my nose.  if i hold my left index finger on the edge where it leaks, voila, no air escaping.  of course i can't sleep that way.

i want simply to lie down and go to sleep, and wake up in the morning.  interestingly, last night no cpap at all, i got over 7 hours straight without waking once, and i am not so sleepy today.

i was right.  i was able to borrow an activa from the technician...perfect, no leaking.  the new cushion definitely has a problem with it, so i will return and ask for a new one.  they tried the liberty and i thought i was going to suffocate the minute it was pressurised so no go for that one.  had a good few hours last night, and will persevere

now, of only i hadn't been prescribed a course of steroids for an allergy, i'd sleep like the dead.  for now, i'm bouncing off the damn ceiling

 

thanks for putting up with my rant