I had my first sleep study in August and found out that my oxygen saturation drops to 48% and never goes higher than 90%.  It took 2 months after the initial diagnosis to get the equipment. I had horrible problems with the FF mask leaking, so I went back to the sleep clinic where he tried on every mask they had and they all leaked.  He dropped my pressure from 15 on a cpap w/c-flex to a 14/5 on a bilevel bipap. There were 3 masks he didn't have - the Hans Rudolf, F&P Flexifit and the F&P oral.  The supplier gave me a HR, didn't measure me and didn't try it out with the machine.  I tried, it was too big, so I ordered the seal, still too big, so I measured and the mask she gave me was too large.  She said she would UPS the next size down, but it hasn't arrived yet.  Every night it's the same thing - I adjust the mask so it doesn't leak, I go to sleep and then wake up multiple times with leaks and end up getting less sleep than I used to get (which wasn't enough).  Last night I obviously stopped breathing one time and woke up so startled.  Another time there was so much leaking that I woke up snoring.  All of the other times I had to make adjustments and each one kept me awake for awhile.

I don't have to rush to the bathroom multiple times per night anymore and my mouth isn't a desert in the am, but I'm so tired.  After finding out about my low oxygen levels, I'm afraid to sleep without it, but can't stay asleep with it.  I can't tolerate any of the nasal masks, because I have a serious deviated septum and congestion.  The ENT said I would need several surgeries and he doubts that would solve the problem. I've been on ther verge of tears daily and find myself feeling a little anxious each night when I go to bed.  I sort of miss the passing out instantly from sheer exhaustion days before the treatment.

So - what do I do?  Do I order the other two F&P masks online, suck up the expense and just keep trying?  Do I just give up? Do I call my doctor and supplier daily and bug them so much that they find a solution?  It's been 2.5 weeks and I'm just beside myself.  Can anyone help me on this?

I finally found a DME supplier in my area that will come into my home and actually FIT me for a mask. He is coming next week sometime. I fought with the DME my doc sent me to (apria), and I will never go back to them. It has been a total mess. They had a 20 minute window to get me in and fitted for a mask. Well, we all know that 20 minutes isn't enough time to get fitted. I am using the F&P HC431 FF mask. With the "standard" size seal, I can get it to seal pretty well, but it kills the bridge of my nose. You might try to post around on the boards and see if you can find someone in your area that has found a good DME near you and check them out. Otherwise, it is a !@#!-shoot. The masks are too darned expensive to just keep buying them out of pocket to find out if they will work or not.

I wish you the best of luck!

-Marc

I hear your frustration and depression.  Many of us have been there too.  The girl who brought my initial mask did somewhat fit it, but it was just horrible.  Since August, I'm on my 4th - the last coming out of my pocket because insurance will only pay for one every 3 months.  The people I've been dealing with haven't been very helpful either - it seemed I was calling every week and the last time when I told her I'd ordered a mask on line she got very, very helpful.  Anyway, if you don't have to have a full face mask, I would suggest trying the Activa.  I did a lot of research while going through the other ones to see what masks people liked and lots said the Activa is a good "starter" mask.  You can move around with it and I like to sleep on my side and it's good for that.  I was going crazy, like you, with leaks, fiddling around with them in the middle of the night (seriously considered putting them in the driveway and running over them with the car a few dozen times     Do some looking and see if you think the Activa would work for you.  Everyone has different preferences but this is the one that's worked well for me.  Try not to get too down - I remember getting depressed too.  This just takes time....keep posting to let us all know how you're doing and best of luck!!

Hmm, I'm so tired that I hadn't even thought about the possibility of throwing them in the driveway and running over them.  It's a nice image.
I wish I could tolerate a nasal mask, but after several tries my nose just shuts down and refuses to let air - maybe I should throw the nose in with the mask for the driveway fantasy.

Hi Linnea!!

Sorry you are using the HR Darth Vadar mask.  I know how uncomfortable it is.  ResMed and Respironics FF masks both do not hold pressures well over 9 cmH2O, which explains why your masks leaked if those are the ones you used.  The Fisher & Paykel Flexifit 431 mask works well at higher pressures and is pretty comfortable.  Additionally, it comes with all sizes of masks, so you can find the one which works best for you.

Tell your doc you are not able to be compliant because your supplier did not measure you correctly and does not have the F & P mask, which is the one you need for higher pressures.  See if he can put pressure on the supplier, give you a Rx for the F& P Flexifit 431 and direct you to a better supplier if need be.

I'm also concerned about your low O2 sats.  Did it go up to normal (95-99) with CPAP?

Keep us posted!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Sorry, Linea - I misunderstood the fact that you need a ff mask   .  Sounds like Vicki is giving you some good ideas and hopefully you'll find some answers here.  Good luck!!

Vicki,
I'm actually still using the original leaky Respironics mask.  I tried on the HR and thought it was dreamily comfortable.  I've read here that the Flexifit is the most preferred mask, but that it can cause sores on one's nose.  I called the supplier to find out when the smaller HR was supposed to arrive and to find out what I'm supposed to do if that doesn't work.  She's supposed to get back to me, but hasn't yet.

The sleep technician for the second titration study did not have the greatest grasp of the English language.  She said that everything was good when she got to the higher pressure.  My neurologist simply said 'well, I've seen worse'.  I'm assuming that my oxygen levels did go up to normal, but no one along the line (except for me) seems too concerned about the numbers.

And the more sleepy I get - the more cranky I get.  I think that next week I will call my primary care doctor, the neurologist, the lab, the supplier and the insurance company and let my crankiness out on them - until I get better results.

Cybergoon wrote:

I finally found a DME supplier in my area that will come into my home and actually FIT me for a mask. He is coming next week sometime. I fought with the DME my doc sent me to (apria), and I will never go back to them. It has been a total mess. They had a 20 minute window to get me in and fitted for a mask. Well, we all know that 20 minutes isn't enough time to get fitted. I am using the F&P HC431 FF mask. With the "standard" size seal, I can get it to seal pretty well, but it kills the bridge of my nose. You might try to post around on the boards and see if you can find someone in your area that has found a good DME near you and check them out. Otherwise, it is a !@#!-shoot. The masks are too darned expensive to just keep buying them out of pocket to find out if they will work or not.

I wish you the best of luck!

-Marc

Marc,

I went the expensive route.  Tried a few masks that people suggested were the best.  Well they might be for them, but for me they were a bust.  I still think that if someone wants to buy online for their first machine thats great, but try to find someone local that is GOOD and see if they will work with you on masks.  (note I said good, unfortunately there are those that are not so good as you found   )  The money that I saved on my machine ended up going to buying a bunch of masks to try to find one that I could live with.   (and don't ask what works for me, as it might not work for you!)  The important part is that you don't let it discourage you, there is a mask that you can live with, you just need to find it.  Keep us posted on your progress!

Quote:

ResMed and Respironics FF masks both do not hold pressures well over 9 cmH2O, which explains why your masks leaked if those are the ones you used.  

Everyone's mask mileage varies - how a mask fits on one's face, how the cushion seals (depends a lot on getting the right size to start with), etc.  For me the Respironics FF mask was very leaky.  The ResMed Ultra Mirage FF mask was wonderful!!  My pressure occasionally goes up to 13 briefly some nights with my autopap and the ResMed Ultra Mirage still sealed fine.

I've not tried an F&P FlexiFit full face mask, but have read the same mixed reports on it ("works for me"; "leaks like crazy for me") that one hears about any mask.  I did use two of the F&P FlexiFit regular nasal masks - they leaked for me even at my usual pressures of 8, 9, 10.  So, I didn't ever bother to try the full face mask in that line.  Didn't need to as the ResMed Ultra Mirage FF was doing the job.

Moral of the story - try any and every mask you get a chance to try, no matter what comments you read about it.  If one you like pretty well almost works but springs leaks somewhere,  see if it offers other cushion shapes in addition to the usual sizes.  For example, if a ResMed Ultra Mirage FF "Medium Standard" leaks, try the "Medium Shallow" rather than changing to a whole different size.   Shallow vs Standard (and vice versa) cushion shape can make all the difference in the world in fitting better sometimes.  All of the cushions (size and shape) fit the same plastic outer frame.

I don't know it for a fact, but I've got a hunch that most people will have fewer leak problems using ResMed's "shallow" mask shape rather than "standard" in all the Ultra Mirage masks unless the bridge of the nose is extremely prominent...a prominent beak nose, in other words.

rested gal wrote:

Quote:

ResMed and Respironics FF masks both do not hold pressures well over 9 cmH2O, which explains why your masks leaked if those are the ones you used.  

Everyone's mask mileage varies - how a mask fits on one's face, how the cushion seals (depends a lot on getting the right size to start with), etc.  For me the Respironics FF mask was very leaky.  The ResMed Ultra Mirage FF mask was wonderful!!  My pressure occasionally goes up to 13 briefly some nights with my autopap and the ResMed Ultra Mirage still sealed fine.

I've not tried an F&P FlexiFit full face mask, but have read the same mixed reports on it ("works for me"; "leaks like crazy for me") that one hears about any mask.  I did use two of the F&P FlexiFit regular nasal masks - they leaked for me even at my usual pressures of 8, 9, 10.  So, I didn't ever bother to try the full face mask in that line.  Didn't need to as the ResMed Ultra Mirage FF was doing the job.

Moral of the story - try any and every mask you get a chance to try, no matter what comments you read about it.  If one you like pretty well almost works but springs leaks somewhere,  see if it offers other cushion shapes in addition to the usual sizes.  For example, if a ResMed Ultra Mirage FF "Medium Standard" leaks, try the "Medium Shallow" rather than changing to a whole different size.   Shallow vs Standard (and vice versa) cushion shape can make all the difference in the world in fitting better sometimes.  All of the cushions (size and shape) fit the same plastic outer frame.

I don't know it for a fact, but I've got a hunch that most people will have fewer leak problems using ResMed's "shallow" mask shape rather than "standard" in all the Ultra Mirage masks unless the bridge of the nose is extremely prominent...a prominent beak nose, in other words.

Masks are the make it or break it part of therapy.  Unfortunately what works for me will only work for you if you are me  

RG has great advice, keep trying til you find a mask that you can live with.  Full face masks are tough, but I have heard of folks being on pressures near 18 and not have any problems.  So don't immediately assume that what didn't work for someone else won't work for you either.  

Do you have a good local provider that will work with you on masks?

I feel like a new person today.  I slept w/o the mask, with it and then w/o it - on & off for 15 hours last night.  The supplier was supposed to call me back yesterday, but didn't, to tell me about other options.  They have a policy of once you try on a mask, then it's yours, so it wasn't like I got to shop around and try a variety on.  I did at the lab last week, but they had a pretty poor selection.  I'm usually a pretty patient person, but this has really gotten to me.  I don't really mind the machine or even a mask, much to my surprise, but getting woken up several times per hours with leaks after waiting months for treatment is ridiculous.

Quote:

The supplier was supposed to call me back yesterday, but didn't, to tell me about other options.  They have a policy of once you try on a mask, then it's yours, so it wasn't like I got to shop around and try a variety on.

Linnea, this isn't the first time I've read something like that, but it always amazes me that any local DME ("durable medical equipment" - the people that supply you with machine, mask, humidifier) would say, "Open it, it's yours."

It's often said that a reason for people to get their first equipment from a local DME rather than ordering things from online stores is precisely so that you will get to try on masks, have hands on "expert" help with fitting, be able to exchange a mask that doesn't suit you....  Well.   Sure depends on the policy of each local DME, doesn't it?   Looks like yours is not very helpful at all.    I agree with you, it's absolutely ridiculous to be stuck with whatever ONE mask you put up to your face, and end up with a leaky mask when you're trying your best to comply with treatment.   A good mask is sooo important.  For shame on that DME.

I've also read about DMEs that do go the extra mile and do let a person keep trying mask after mask after mask -- even taking them home and then bringing them back until one that is suitable enough to wear under real sleeping conditions is found.

Any chance that you could shop around for a better DME?