The search for a FFM (again)

[snuginarug]

Ed, thank you for bringing this up. I started a thread about the mask settings, and got some interesting answers as well as finding a few on my own.

It appears that the mask settings, while intended for comfort alone, do affect how the mask sits on the face. I have determined, for me, it is best left "off." Thanks to the clinician's manual a fellow hosehead sent me, I was able to enter the clinician menu and ascertain that the setting actually is off. Therefore I needed to make no changes. BUT if it had been on, your question would have alerted me to its status and allowed me to fix something pretty important.

If anyone wants to know more about this setting, here is a good thread about it: viewtopic/t52081/System-One-Resistance-Control.html

[Kairosgrammy]

You can go to the apnea board and download a manual and you can jailbreak your own cpap. Here's the url: http://s7.zetaboards.com/Apnea_Board/index/

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.

[snuginarug]

Luckily, I already have a manual, a fellow hosehead sent it to me a long time ago. It does say HOW to do things, but doesn't explain WHY you'd want to do it. But once again, CPAPTalk has come through with the pertinent answers. I got the info I needed in my thread about mask settings.

*sigh*

I slept horribly last night, AHI almost 11. At the peak of event activity I woke up and tore my mask off and had to just sit on the edge of my bad to get over the suffocation feeling and the bad dreams. My leak data looks OK, so there is something else going on here. In order to get this mask to stop leaking I have to sleep on my back. I guess that is probably a factor. But I slept on my back with my nasal and my AHI stayed below 3. I don't understand. I find this so frustrating. I guess I will just switch back to the nasal and keep the Forma as a back up for congested nights. I will continue my search next resupply. I am worn out from all this mask trying.

Thanks for all the support, guys, I appreciate it.

[Namlehse]

I've been trying to find something that works for me lately.. My CPAP setting was 18 until last week, so it's been a bit of a challenge. My DME has been less than helpful in getting me a working mask. They keep trying to stick me with a Quattro FX. When they do find me a different mask, it's the wrong size (I use a small, they keep sticking me with medium and large masks!).

I finally ordered a Hybrid on my own, I'm also now using an auto range of 12-18 (Will be 13-18 tonight). I'm hoping my new mask will make it here tonight! The Quattro is a little easier to manage with less pressure.

I have been considering the Forma, but I'm told it doesn't handle higher pressure so well, anyone have any experience with this? About where does it start leaking to the point of annoyance?

[snuginarug]

My DME has been less than helpful in getting me a working mask. They keep trying to stick me with a Quattro FX. When they do find me a different mask, it's the wrong size (I use a small, they keep sticking me with medium and large masks!).

Goods gracious, that's awful. And why do they have to find you a mask? It's not like they are hard to get... call one of the 4 or 5 major mask makers and say Give me one in small. You don't have to go out and hunt around, looking under stones. Sheesh.

I have been considering the Forma, but I'm told it doesn't handle higher pressure so well, anyone have any experience with this? About where does it start leaking to the point of annoyance?

My pressure is 9, so I can't help you there. When my Forma leaks, it has the same pattern of all my ill-fitting masks... too long, and it either leaks at the chin or under the eyes. However, I think that is because my face is short, as it is a consistent problem from mask to mask. Try starting a topic of your own... get advice form others who have high pressures. People here are full of help, and you'll get plenty of information on your particular situation.

[Kairosgrammy]

Have you increased your humidity setting. That will help significantly with nasal congestion. It's all I do and I have pretty bad allergies etc. If things are especially, I use a netti pot before going to bed. Clears out sinuses and that and the humidity on cpap help to keep me clear.

Luckily, I already have a manual, a fellow hosehead sent it to me a long time ago. It does say HOW to do things, but doesn't explain WHY you'd want to do it. But once again, CPAPTalk has come through with the pertinent answers. I got the info I needed in my thread about mask settings.

*sigh*

I slept horribly last night, AHI almost 11. At the peak of event activity I woke up and tore my mask off and had to just sit on the edge of my bad to get over the suffocation feeling and the bad dreams. My leak data looks OK, so there is something else going on here. In order to get this mask to stop leaking I have to sleep on my back. I guess that is probably a factor. But I slept on my back with my nasal and my AHI stayed below 3. I don't understand. I find this so frustrating. I guess I will just switch back to the nasal and keep the Forma as a back up for congested nights. I will continue my search next resupply. I am worn out from all this mask trying.

Thanks for all the support, guys, I appreciate it.

[snuginarug]

Have you increased your humidity setting.

Yes I have. I was struggling horribly when I first got my machine a year ago, and some nice person on here told me to try that, even though it seems like the last thing you need to do when stuffy. Worked like a charm, at first. I've got the humidifier on 5, the max.

If things are especially, I use a netti pot

Hmm. I have been avoiding the netti pot. It looks intimidating and unpleasant. I have also had pharmaceuticals suggested to me. I am definitely NOT going to do anything chemical at all. I don't have allergies,and I already take enough stuff that is taxing my liver. The netti pot I have put to one side. I have not positively ruled it out. But I am very reluctant.

The MAIN thing going on here is that I HATE HATE HATE HATE nasal masks, and my nares are too long and skinny for pillows. I am congested maybe one night out of seven. So while that is significant, the MAIN thing I am trying to address is my EXTREME HATRED of nasal masks.

For the time being, I am taking a break from trying new masks. I will revert to the hated nasal, and use the Forma for congested nights. I am not happy about this, but I am worn out trying new masks. In three months, my next resupply, I will begin again. I have basically tried all F&Ps and will move on to the Respironics. I have already ruled out all quattros as the sizing is totally off for me. I fall exactly and precisely between small and medium. Which is frustrating because the air cushion is so lovely. *sigh*

Thank you again for all your suggestions and support.

[snuginarug]

I have had some interesting experiences...

The Forma FFM was leaking a tiny bit, hardly enough that it seems it would matter. My AHI was was getting as high as 30 though. So I chucked it in a corner and went back to the nasal. Fast forward to this week. I suddenly started having congestion that would not drain upon sitting up. (My pattern with the nasal is sleep 3or 4 hours, until nasal swelling suffocates me. Then sit up for an hour or two while the swelling drains, then back to bed for a couple of hours.) I was so tired I was crying off and on all day. You guys know what it is to be so tired. It is a special hell.

So I got out the Forma, and thought about things for a while. If my AHI goes up to 30 while wearing this mask, I might as well not wear a mask at all. But the leaking was SO TINY it didn't seem to explain such a ridiculous AHI. So I got out my illicit clinician manual, switched it to auto, set the range 8.5 to 12. Kind of wide, but that's what I did. Then tried the Forma for 2 hours like this. My AHI went up to 10, and then stopped. With the pressure pretty much staying at 12, I consistently got an AHI 10 or less. So I continued my experiment and slept several hours more. Same exact results, pressure up to 12, but AHI 10 or lower. All this with the exact same leak rate as before. The leak rate line was practically flat, practically identical. Soooo... it seems that if I raise the pressure, this mask works.

YAY!!!!

Thank god. No more crying from tiredness, no more scratchy eyes and confused brain. So I will use my nasal unless I get congested. Then I will switch to the Forma. Next resupply I will start trying Respironics masks, to see if I can find something more comfortable and less leaky than the Forma.

[codinqueen]

Try an INNOMED HYBRID. I usually use a Swift FX and wanted something for when my nose has a cold or sinus infection. My DME ordered me a Liberty Mirage, which I hated, couldn't get it to not leak. I called the DME back to complain after trying to sleep with it that first night, and they ordered me the Hybrid then. It took about 3 weeks for it to come in, but it is exactly what I needed for stuffy nose nights.
I still have the Liberty Mirage, in size small. and will send it to you if you want it and if you can pay postage. I think it will fit in a Medium preferred mail box for the Post Office and I think they cost about $10.50postage for that size. I only had that Liberty mask on for less than 5 minutes. Just PM me know if you want to try it.

[snuginarug]

I still have the Liberty Mirage, in size small. and will send it to you if you want it

Wow, codinqueen, you are so kind! I never cease to be amazed at the generosity of people here on CPAPTalk. Unfortunately, my nares are too long and narrow for pillows and I cannot use a hybrid. But thank you very much!

[snuginarug]

UPDATE

The Forma continues to leak constantly, but AHI continues to be 10 or less, and I feel super in the morning. Less than 5 is ideal I know, but I will accept less than 10 if I feel good in the morning. I have been using the Forma exclusively for a while now (too lazy to switch masks) and as an experiment tried the nasal for a couple of hours. I woke up anxious and unhappy. Apparently I detest the nasal all night, even in my sleep, and the anxiety follows me into unconsciousness. So I am sticking with the Forma until my next resupply. I might check out some respironics masks to see if I can get one that leaks less. But I might just settle with the Forma, as the fit problems I am having are the same with F&P as well as ResMed... my face is too short, and the masks are always leaking at the eyes or at the chin. I have a vague idea of actually measuring the length of the mask with a ruler and comparing it with a respironics.

I don't know... It is frustrating. On the one hand, I feel great when I wake up, so that's a very good thing. Maybe I shouldn't mess with it. But I am also constantly waking up to readjust the mask, and somehow I can't help thinking that having no leaks would be better than having constant leaks.

*sigh*

At any rate, I am feeling good in the morning, so things are definitely looking up. Focus on the positive, right?

[snuginarug]

Well, I think I have finally found an adequate mask! I ordered a Forma form my DME and they sent a 432. I was feeling very apathetic so I didn't ask for an exchange. Lo and behold! With the P-A-C anti leak strap, it works! Thank god, I was getting close to giving up and switching back to the nasal, even though I hate it and wake up unhappy and anxious after a night with it on. I've got my fingers crossed that this is it, the right mask for me.

[snuginarug]

I am delighted to say, with the padacheek anti-leak strap, the 432 is working just fine, has been doing so for over a month.

[codinqueen]

Hey Snug, The size of your nostrils has nothing to do with being able to use nasal pillow masks. The nasal pillows sit at the very entrance of your nostril, they don't go the whole way up inside. Just sayin'...............

[snuginarug]

Well, the size of my nostrils is not the problem... they have many sizes to accommodate a variety of people. You need a seal with pillows as you do with all the other masks. When you rest a doughnut shape against a slit, you get a triangle of space not filled by the doughnut... hence no seal. When I squeezed the pillows into ovals instead of doughnuts, they worked great, but you can't hold your mask in place and sleep at the same time. Which really bummed me out, as the pillows were wonderful. I envy those with normal nares. Mine are just freakish. It's not a common problem.