The search for a FFM (again)

FoxNewsFan · Post by **FoxNewsFan** » Tue Jan 24, 2012 9:24 am

Snug,

After reading Purple's comments I was thinking of trying the Forma and getting it from the mask library.

First, I went to the F & P website and read all about it. Under cleaning instructions it states that the foam insert cannot be disinfected and a new one should be used between patients.

I e-mailed the Library to see if they included a new foam insert. I am awaiting their answer.

After reading rested gal's post about the FitLife Total Face Mask, I got one. It has a lot of good points. The exhaust noise is very quiet and I didn't feel it blowing on my arms. It was comfortable, although a little narrow between my cheek bones and temples. The first night I liked it. The red marks it left went away after a few hours, which is OK with me. If I was a back sleeper, it would be great but unfortunately I sleep mostly on my sides. Even though I use a soft pillow, after 3 nights the red marks caused by the mask pushing on the sides of my face didn't go away at all. If I loosened the straps then I got farting by my forehead. Actually the farting sounded like a high pitched squeal. I tried and tried to adjust the straps to no avail. I'm going to send it back.

I've been on CPAP for 3 1/2 yrs. Most of the time I have used the Mirage Quattro with great success. The reason why I tried the FitLife was that I sleep mostly on my right side and most nights a little saliva leaks out of my mouth and collects in the corner of my mask. Over time the acid in my saliva has made a red mark on my face which now does not go away. At first I tried CeraVe, a hydrating cleanser, on the spot and it went away. Then it wouldn't go away so I began putting on the CeraVe before putting on the mask at night and in the morning. This seemed to help but eventually, that even failed. Then I tried Lasinoh but that didn't work either. Maybe I should drink a bottle of wine in the evening. Then I will become dehydrated and not salivate. I just ordered a mask liner from PadACheek for the Quattro. Maybe that will help.

I am going to order the Forma either from the library or my DME after I find the answer to the foam insert question.

CPAP is certainly a challenge but the alternative is a lot worse.

I hope some of what I have said has been helpful.

Ed

snuginarug · Post by **snuginarug** » Tue Jan 31, 2012 9:13 am

archangle wrote:When people discuss AHI, they're usually discussing the daily average.

Ok, I understand now, thank you. That is the number I have been referring to.

Thanks for the info, Fiberfan. I will definitely keep that in mind.

FoxNewsFan wrote:I hope some of what I have said has been helpful.

Yes, it is always good to hear others' experiences. Thank you for sharing yours.

FoxNewsFan wrote:CPAP is certainly a challenge but the alternative is a lot worse.

Never said anything truer! Amen to that!

UPDATE:

Wow, with the 432, my AHI was hitting the high twenties. It was soooo comfortable, though! I tried everything I could think of to make it stop leaking, to no avail. So I gave up and brought it in and traded it for a large Forma. Well, I was supposed to get the fit pack with medium and large both, but the medium wasn't in there. Anyway, I now have the large. It did not leak at all in the office, except when I sat up. Otherwise, lying down, I didn't have to adjust it or wiggle it or re-seat it to get no leaking. It just didn't leak at all. I try very hard to relax my face when trying on in the office, but you can't really achieve the same facial relaxation that one experiences ion sleep. Anyway, promising start. We'll see. Thanks to JediMark and SleepyHead, I'll be able to track my AHI.

Kairosgrammy · Post by **Kairosgrammy** » Tue Jan 31, 2012 9:51 am

I can't wear a ffm. There's no telling how bad my nervous breakdown would or could be. I've thought though of a hybrid mask which would help with the stuffy nights or just plain sleeping with my mouth open. Having a hybrid mask can't be anymore invasive than nasal pillows and a chinstrap. But I still worry about the claustophobia with a hybrid. But if you don't have those issues, perhaps that would be a good solution rather than trying to get a ffm to fit???

snuginarug wrote:When I started my cpap therapy just over a year ago, I didn't know jack about anything. In a dizzy whirlwind, I tried many masks, without really knowing exactly what was what. We finally settled on a small Resmed softgel nasal. It works fine. Except when my nose is stopped up. Then I can sleep without a mask, or just not sleep at all. Lately I have been choosing to not sleep at all, as sleeping without a mask leaves me feeling even crappier than I felt when I went to sleep. However, not sleeping at all is not an ideal situation. So now, as a wiser, more saavy cpap user, I am going to try to find a FFM. The Ultra Mirage Quattro was infuriating because the medium was too big and the small too small. Such a good mask! *sigh* So now after researching a bit, I am going to try exploring the F&P masks. As I understand it, they have three models: 431, 432 and the Forma. Anyone with experience with these masks... your input would be greatly valued. I'd especially like to hear from folks who have tried/used both Quattro and F&P, for, most importantly, the sizing differences.

In addition, any tips for trying masks would be greatly appreciated. My DME has a bed I can lay down on, and I bring my own pillows for fittings.

Thank you, fellow hoseheads!

lullaby · Post by **lullaby** » Tue Jan 31, 2012 6:33 pm

I'm keen to give the Forma another go. I did trial it nearly a year ago but i don't think i gave it much of a chance. After reading some of the posts here, i'm trying to confirm that if you order a medium size Forma, you actually get two cushions in medium and large size? Is this correct? Is this also true if you order the large size mask? I need to know as i'm going to have to purchase the mask as we don't have an exchange service here in OZ (not that i know of anyway). Thanks in advance.

snuginarug · Post by **snuginarug** » Tue Jan 31, 2012 6:51 pm

lullaby wrote:I'm keen to give the Forma another go. I did trial it nearly a year ago but i don't think i gave it much of a chance. After reading some of the posts here, i'm trying to confirm that if you order a medium size Forma, you actually get two cushions in medium and large size? Is this correct? Is this also true if you order the large size mask? I need to know as i'm going to have to purchase the mask as we don't have an exchange service here in OZ (not that i know of anyway). Thanks in advance.

https://www.cpap.com/productpage/fisher ... -mask.html

When you choose sizes, there is an option of medium AND large. Make sure the masks sold in Australia are the same before purchasing. It might vary from country to country. I believe this boxed set of mask with 2 different sized cushions is sometimes called "the fit pack."

snuginarug · Post by **snuginarug** » Tue Jan 31, 2012 6:58 pm

Kairosgrammy wrote:I can't wear a ffm. There's no telling how bad my nervous breakdown would or could be. I've thought though of a hybrid mask which would help with the stuffy nights or just plain sleeping with my mouth open. Having a hybrid mask can't be anymore invasive than nasal pillows and a chinstrap. But I still worry about the claustophobia with a hybrid. But if you don't have those issues, perhaps that would be a good solution rather than trying to get a ffm to fit???

Hmm.... My one try at pillows was a decided failure. My nares were too long and skinny. I really liked pillows. I wish I could take your suggestion.

Kairosgrammy · Post by **Kairosgrammy** » Wed Feb 01, 2012 7:56 am

Wow, that's no fun. LOL, the RT that started me on my first set of pillows said, now your nares might get bigger and bigger. I believe my eyes were huge. I mean, who wants bigger nares. Guess that was misinformation, I still use small pillows. I even tried the medium pillows with my current mask and they hurt my nose. I'd be in a pickle though if I couldn't use pillows. I tried a nasal mask for 3 weeks and was more tired than I was pre - cpap. I would try to sleep and my heart would be pounding in my chest. I knew I was a tad claustophobic but I didn't think it was that bad.

snuginarug wrote: Hmm.... My one try at pillows was a decided failure. My nares were too long and skinny. I really liked pillows. I wish I could take your suggestion.

snuginarug · Post by **snuginarug** » Wed Feb 01, 2012 8:35 am

If this were not a public forum I would be cursing a blue streak. The large Forma is just a teeny tiny itsy bitsy little bit too big. It leaks. A very small amount, but it leaks. I spent the night rearranging the mask continually. Grrr. ---> insert curse words <--- I don't understand, it fit perfectly in the office. I brought my own pillows, arranged them as I usually do, laid down for quite a while, rolled about, I did it all. There is no more I could have done. My AHI was high too.. 16. Although, with that I am wondering if this is an inherent problem that would not be fixed by stopping all leaks. The AHI I was getting with the 432 seemed disproportionate for the amount of leaking. This mask, even more so. The leaks are TINY! I am wondering if using a FFM means I must have a higher pressure than with the nasal.

I am going to continue with this for a couple of days to see what happens, then call the DME to see if there is someone competent enough to discuss AHI with me. If no one there can understand the problem, I will call my sleep doctor.

Kairosgrammy wrote: I tried a nasal mask for 3 weeks and was more tired than I was pre - cpap. I would try to sleep and my heart would be pounding in my chest.

My reaction was not quite so severe, but I found the nasal anxiety producing EVERY SINGLE NIGHT. I used it for over a year because I was convinced there was, nowhere in the world, a FFM that would fit me. I am still wondering about this. But the congestion I started experiencing was the last straw. I would wake up suffocating because I could not breathe through my nose (talk about anxiety producing!) and then just sit up until my nose drained. I was given some suggestions on how to deal with congestion, but i figured looking for a FFM would be better as I hated the nasal SO MUCH anyway.

I'll keep you guys updated.

snuginarug · Post by **snuginarug** » Wed Feb 01, 2012 8:41 am

I just had a brain storm! I have an auto... it is possible I could try a range of pressures to see if higher pressure would bring my AHI down while using a FFM. I will definitely talk to someone, DME or sleep doc, about this idea.

snuginarug · Post by **snuginarug** » Thu Feb 02, 2012 7:30 am

** beware **
Abject whining ahead.

More cursing. The Forma leaked even more last night... do they stretch out a bit? I am eagerly awaiting my anti-leak strap from pad a cheek. She says that if pressing against the elbow of the mask works, the strap will work, and my experiments with that have been hopeful. I am quite frustrated with things though. The damn thing seemed to fit perfectly in the office! I wouldn't have taken it home otherwise. This is infuriating. I hate nothing more than trying to sleep with an ill-fitting mask. Well, actually, I hate nasal masks more. So I will persevere.

OK< whining done.

snuginarug · Post by **snuginarug** » Fri Feb 03, 2012 6:02 am

Even worse leaking than the night before. It was so bad I switched to my old nasal in the middle of the night. Yes, I still abhor and despise the nasal. But I really needed some uninterrupted sleep. It's strange, I sleep less soundly with a leaky FFM than with a nasal, and my AHI is higher, but I feel better after using a FFM than I do when i sleep through the night with a really low AHI with the nasal. I ascribe that to my hatred of the nasal. It creates anxiety in me so severe I have trouble breathing when I lie down. I think that anxiety follows me into my sleep. So the hunt for a FFM must go on.

However, I think it is time to stop for the time being. If I can't get the large Forma to work with anti-leak straps, gel pads, mask liners, etc., I will renew the search at my next re-supply.

I gauge the effectiveness of my therapy (aside from AHI) by the edema in my ankles. When I manage to get a good number of hours with the FFM my edema disappears completely. It rarely does with the nasal, no matter how many hours I get. Weird. So it is hard to say which I should use in the meantime... leaky FFM or dreaded nasal? Any opinions?

FoxNewsFan · Post by **FoxNewsFan** » Fri Feb 03, 2012 9:00 am

snuginarug wrote:Even worse leaking than the night before. It was so bad I switched to my old nasal in the middle of the night. Yes, I still abhor and despise the nasal. But I really needed some uninterrupted sleep. It's strange, I sleep less soundly with a leaky FFM than with a nasal, and my AHI is higher, but I feel better after using a FFM than I do when i sleep through the night with a really low AHI with the nasal. I ascribe that to my hatred of the nasal. It creates anxiety in me so severe I have trouble breathing when I lie down. I think that anxiety follows me into my sleep. So the hunt for a FFM must go on.

However, I think it is time to stop for the time being. If I can't get the large Forma to work with anti-leak straps, gel pads, mask liners, etc., I will renew the search at my next re-supply.

I gauge the effectiveness of my therapy (aside from AHI) by the edema in my ankles. When I manage to get a good number of hours with the FFM my edema disappears completely. It rarely does with the nasal, no matter how many hours I get. Weird. So it is hard to say which I should use in the meantime... leaky FFM or dreaded nasal? Any opinions?

When you are switching masks, are you changing the mask settings on the machine? Also, sometimes it takes a week or even more for a mask to "settle in" I liked the anti-leak strap though I found that after a while I didn't need it anymore. Maybe the contours of my face changed and fit the mask better. It's a weird science. One night the mask will fit perfectly with no leaks and the next I will wake up 20 times with the noise from leaks.

I sent back my FitLife to my DME and just received a new Forma. I will let you know how I like it in a week or two.

I got the mask liner for the Quattro and I like it. All of PadACheek's stuff is well made and high quality. I now have three different things from her.

I wrote previously----After reading Purple's comments I was thinking of trying the Forma and getting it from the mask library.

First, I went to the F & P website and read all about it. Under cleaning instructions it states that the foam insert cannot be disinfected and a new one should be used between patients.

I e-mailed the Library to see if they included a new foam insert. I am awaiting their answer.

It's been 9 days since I e-mailed Mask Library about disinfecting the insert and they haven't answered me yet so I have to assume they don't include a new foam liner when they send out the Forma to a new person.

Use your own judgement if you want to use a mask that F & P states cannot be disinfected.

Take care,

Ed

snuginarug · Post by **snuginarug** » Fri Feb 03, 2012 8:44 pm

FoxNewsFan wrote:When you are switching masks, are you changing the mask settings on the machine?

I don't know what this means. I thought only S9s had this feature. Am I wrong?

FoxNewsFan wrote:Also, sometimes it takes a week or even more for a mask to "settle in"

I wore the last one 14 nights, so that one never did settle in. Maybe this one will? (She says hopefully.)

FoxNewsFan wrote:It's been 9 days since I e-mailed Mask Library about disinfecting the insert and they haven't answered me yet so I have to assume they don't include a new foam liner when they send out the Forma to a new person.

They took a while to get back to me, longer than I'd expected. I'd want to know their answer before trying a Forma too. That is sort of a gross idea.

FoxNewsFan wrote:It's a weird science. One night the mask will fit perfectly with no leaks and the next I will wake up 20 times with the noise from leaks.

I find this so strange. My nasal seals perfectly every single time, never ever had any problem at all. But I suppose FFMs are a whole different world.

What I find really strange is feeling so damn good after using the FFM that leaks like a sieve and has horrible AHI numbers. The remarkable reduction of edema in my ankles is especially confusing. That makes me lean more towards living with a leaky FFM. That seems like a very important indicator that I am doing something right.

FoxNewsFan · Post by **FoxNewsFan** » Sat Feb 04, 2012 6:42 pm

I don't know anything about your machine but this is from your manual----

• SYSTEM ONE resistance ( ) - This setting allows you to adjust the level of air pressure relief based on the
specific Respironics mask. Each Respironics mask may have a “System one” resistance control setting which will
appear next to the symbol (ex. X3). Contact your home care provider if you cannot find this resistance setting for
your mask. If your provider has locked the resistance setting into place, you can view the setting but cannot change it,
and the screen will display a lock symbol. If your provider has disabled resistance, you will not see this setting.

Does this help???????????????

Ed

snuginarug · Post by **snuginarug** » Sat Feb 04, 2012 8:04 pm

FoxNewsFan wrote:I don't know anything about your machine but this is from your manual----

Thank you for this. My machine came sans manual. No one, in all this time of trying a multitude of masks, has ever mentioned this setting to me. Maybe it is disabled. At any rate, it is not something I can figure out how to access. I'll have to call them on Monday, and they will probably have no idea what I am talking about. Then what I will do I don't know, as I am quite ignorant of what this setting means and why it exists. I can't explain to them what the problem is if I don't understand it myself. So if anyone could explain what this setting is for, I'd much appreciate it. I am quite embarrassed at my ignorance.

On a brighter note, since I changed to this mask, my AHI has gone down by two thirds. It is still over 5, but less than with the 432. This mask seems to leak almost as much as the 432, from my subjective sense, but the machine data is saying something else.

The search for a FFM (again)

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