I'm scared and disgusted

[tbas]

I don't know what to do anymore. I know I've been on cpap for only 2 weeks, but I've already been through two masks and I'm waiting for my third. As per suggestions, and me reading product reviews of the respcare hybrid ffm, (I'm a mouth breather) my dme person ordered it for me but told me I have to wait about 2wks for it. In the meantime, for the past 2 nights, I've been using the swift lt for her and I can't stand the feel of the nasal pillows. I've been pulling it off in the middle of the night. Did I make a mistake by asking for them to order the hybrid mask because of it's nasal pillows? I'm afraid the dme people will not give me anymore masks, if I can't use it. In the meantime, THIS IS THE WORST I'VE EVER FELT!!!! I'm sorry I ever went for any sleep study...I should have stayed the way I was. I'm also fuming because my sleep doctor sent me to 2 sleep clinics that didn't accept my insurance, & I never knew it. I'm ready to pack it all in. Any words of encouragement?

[grady61]

I don't know what to do anymore. I know I've been on cpap for only 2 weeks, but I've already been through two masks and I'm waiting for my third. As per suggestions, and me reading product reviews of the respcare hybrid ffm, (I'm a mouth breather) my dme person ordered it for me but told me I have to wait about 2wks for it. In the meantime, for the past 2 nights, I've been using the swift lt for her and I can't stand the feel of the nasal pillows. I've been pulling it off in the middle of the night. Did I make a mistake by asking for them to order the hybrid mask because of it's nasal pillows? I'm afraid the dme people will not give me anymore masks, if I can't use it. In the meantime, THIS IS THE WORST I'VE EVER FELT!!!! I'm sorry I ever went for any sleep study...I should have stayed the way I was. I'm also fuming because my sleep doctor sent me to 2 sleep clinics that didn't accept my insurance, & I never knew it. I'm ready to pack it all in. Any words of encouragement?

youll need to give your therapy some more time. I started just last November and was lucky to get 4 hrs of sleep now Im up to close to 6.5 hrs per night. You'll get the mask issues etc resolved, just sometimes it doesnt have a fast as youd like it too.

[BlackSpinner]

There is no reason for the hybrid to take 2 weeks to get there. I ordered from cpap.com and got it in 4 days in Canada.
Have you tried the Quatro mask from resmed?

[LinkC]

First, there's no way to go but UP from here!

Second, it's quite normal to go thru several masks before you find one that works for you. It WILL happen. And, if it isn't the Hybrid, it'll be something else.

There's a LOT of changes to get used to. Don't expect everything to fall into place in the first two weeks. But you WILL find the right mask. You WILL start sleeping better. You WILL start feeling better. So much so that you won't believe how bad you felt before. Many of us have been there. (And someday, you'll be telling a "newbie" on here the same things I'm telling you now!!!)

[tbas]

Thank you soooo much LinkC. Your words are very encouraging. I guess I need to be more patient.

[Madalot]

Hey --

I'm pretty new at all of this too. I have tried so many masks it is pitiful!! Seriously. My DME has let me try every mask they had and ordered me a ton more to try. There's only ONE -- and I do mean ONE -- that I have managed to use all night.

And if you read some of my posts, you will see that my adventure is ongoing. Like one of my subject lines says: I've feel like I've been around the barn and back again. Problem is: I'm still traveling!!

I know how you feel. There have been times in recent weeks that I've wanted to pack up all the equipment and give it back and just let the cards fall where they may. But I won't because I have a problem that needs to be corrected and this is the way to do it.

Seriously though -- this is not easy. Even when your equipment is perfect for you, it takes a lot of time for some to adjust and start feeling better.

Please don't give up. You'll get a ton of help and support here.

[nobody]

Hang in there! I lost count of how many masks I went through in the beginning. My DME would only exchange once, so I used the cpapauction site to buy and sell masks until I got something that worked for me. The site was cheaper to use then, though. It's a shame they raised the rates so high

I hate the nasal pillows as well. So maybe that is just not the mask for you. I would suggest trying the Respironics Simplicity. It's a mask that's on the cheaper side and I find it very comfortable and easy to use. I think the ComfortLite 2 also has a nasal cushion that is similar to the Simplicity's cushion, but I've never used it so can't say how good it might be.

[dtsm]

Hang in there, it'll get better.

I'm on week 6/7 of cpap - I started or at least tried to start last March 2009 but due to other medical issues, had to stop. I never thought of giving up, just a long delay.....this time around, it took me 2 masks and almost 4 wks to get used to it all. I can now sleep 6-7 hrs but my numbers still need to be tweaked.

I know it's a long journey and the keys are patience and perseverance. This forum will help you - give a shout whenever!

[torontoCPAPguy]

Yes. A word of encouragement. Stop complaining.

You have an opportunity here that billions will never even know about nor understand if you tell them about it. You are at the beginning of your journey and it is a difficult one at best but in the end you will, in all liklihood, improve your health and fell better than you have in years.

You need to change your mindset from one of instant gratification to one of struggle. Because that is exactly what this is. A struggle. A struggle to find the right machine (blower); a struggle to find the right mask (I am on number 4 or 5 now and just getting close to what works for me); a struggle to figure out what the heck it is that they are saying to you (time to educate yourself and become your own advocate - do NOT depend on sleep clinics especially, nor even many MD's. Get the best respirologist and the best MD specializing in sleep disorders that you can possibly find even if it means driving or being driven five hundred miles to do it); a struggle to find the right settings on the blower; a struggle to just find the right blower!; a struggle to get up feeling like crap and continue on day by day towards the light at the end of the tunnel; and so on.

Encouragement? First comes struggle - guaranteed. Then comes improvement, perhaps small at first but definitely preceeded by many disappointments. Then perhaps you will, as I did, come home one day with a mask that was so wonderful it brought tears to my eyes, literally. And I tried it on and played with it so it didn't cut the circulation to my nose off or cause blisters on the bridge of my nose and while I was playing with it I fell asleep and slept right through dinner - my family thought that I was dead. And I was. I was dead to the world asleep and I awoke feeling as good as I had felt in a half year without drugs.

Encouragement? First struggle. I don't think I have seen anyone on any of the boards who received instant gratification. My first night of great sleep was an epiphany. I slept eleven hours straight and awoke ready to take on the world. There will be good days and bad days at first and they will get better as you get used to sleeping with foreign contraptions aiding you.

Today? I am still learning about CPAP/BIPAP/APAP/etc. and making some progress daily. And you will too. What you need to put out of your mind is instant gratification; put out of your mind the thought that you will not have aggravations because you will and you need to ignore them; and above all.... above all... put in your mindset the thought that there is light at the end of this tunnel because I can assure you that for 99 percent of us hoseheads there IS INDEED light at the end of the tunnel. It just takes time and effort and a whole lot of willpower to get there.

I refer you to the post on Dr. Park's teleseminar on CPAP masks coming up... you may find some joy there. I know that I will be on it. No matter how good the mask you are using there is going to be one that is better for you.

Keep at it. In the end it will all be worth it in terms of how you are feeling and in terms of your health. Promise.


Oh. One other thing. Up here in Ontario the health care is supposedly covered by the government. BS galore. I walked out of MediGas with a $1700 VISA bill and that was after the government chipped in their thousand bucks. And what I had was a measly ResMed S8 Escape II. CPAP.COM, our sponsor here, sells the top of the line Autoset II for about $550. You do the numbers. I have since bought a second one to travel with and for standby as I will not sleep without APAP again if I can help it. It causes my blood oxygen saturation to plummet and my blood pressure to skyrocket to the point where you can die 'peacefully' in your sleep. Or so it looks to those around you. This is going to cost money and I have come to the mindset that regardless of what it costs I am going to do this thing and get properly equipped. My life, quality of life, health, etc. depends on it. And that's the way you need to be thinking too. I can't afford it... heck.

I apologize if some of my words seem harsh but I am telling you like it is. For me anyway. And I am encouraging you to keep at it and to heck with the aggravations because when you get to the light at the end of the tunnel it will all have been worth it. THAT is your encouragement. Oh, and another thing. On this board you have a wealth of information and a bunch of new friends who are here to share and to help. If you have a bad night, we are here to listen. If you have a good experience, we want to share it with you. The only dumb question is the one that is not asked... although you may find one or two that will think otherwise on this or any of the other boards. Ignore them... in fact this board has, I believe, a feature that permits you to TOTALLY ignore them. Yay.

Encouragement? You have taken the first step (the hardest part of the process); you are sticking with it; you have light at the end of the tunnel whether you can see it or not at present; you have a wealth of information and expertise and experience surrounding you and you have a bazillion new-found friends here who empathize with every single step you are going through because many of us have been there ande done that and have the T shirt (there IS a t shirt guys, right?). Keep with it! Better times are coming!

There is no encouragement like the experience of the folks around you that are sharing your experience. Here you have it. Be encouraged. Feel good about what you are doing because at some point the light bulb is going to come on and you are going to realize that you haven't felt this good in months or perhaps years. I know that's my case. And I am sharing it freely with you both as encouragement for YOU and, with thanks, as encouragement for ME, MYSELF and I.

Encouragement? There is no place in the world you are going to get more encouragement that right here.

And as to being afraid? I think we are all a bit frightened by it all and by the unknown; it is human nature. When you are feeling that feeling in the pit of your stomache take an hour and visit some of the APNEA related boards for a boost. At some point you will find that you have things to share and I encourage you to do so because no matter how trite it may seem, the sharing of that experience makes everyone feel better. And encouraged.

Good luck to you. Keep at it. We are all at your side.

[Judy R]

I think all of us here can relate. It is hard, and it does take time, but by coming here, you've taken the first step on your journey. There are so many wonderful people here, and they have tons of wisdom and fantastic suggestions, and they are such a huge help. Just keep asking questions, no matter how silly you may think the question is. There is always someone here to help and to guide you. They are such caring people and I don't know what I'd do without them. So, welcome to the group, we're happy that you've joined us.

[tbas]

Thank you to all who are giving me encouragement. I am so happy I found this site. I've never in my life found such caring and encouraging people! Everyone here is truly a God-send. It is wonderful to have all these new friends!!!!!!!!!

[cwsipe]

Just wanted to say hang in there! I've been using CPAP for about 10 years and I can honestly say that it has saved me from a life of fatigue, fogginess, and depression. It was one of the best things to ever happen to me. Put in the effort in the beginning and you will be rewarded a hundred-fold!

[jules]

Masks take a long time - we go through many. Search for Babette's posts and find the trials she has linked on them - get on some lists and think about masks for the future. Right now you need one for now and got to deal with what you got.

I will be short - get a data capable machine too. Demand your sleep doctor write a script for Elite and get rid of that Escape.

[bearcatx16]

I don't know if your problem with the mask is one of comfort or one of I can't stop the leaks. My problems with masks started before titration. I couldn't put it on and lay down. Fortunately my Dr. allowed me to take a mask and machine home to use whenever I was not busy or not asleep. Whenever I was sitting around I was to put the mask on and turn on the machine. The Dr. set the machine at 7cm H20. It took me 5 months but I went from 15 seconds to where I actually wore it to bed and slept, eventually, all night with the mask on. I was finally able to be titrated, got my proper setting and then the "mask swap derby" began. A nasal mask ended up being my #1 mask but over time, with practice, the LT nasal pillow mask became my #1 mask. I was a hoarder of M pillows for a time. I think I have got enough to last until I decide to try the new FX.

I hope you can get the mask problem worked out.

One other suggestion I might make, if you have not picked up on it, is to get the Escape swapped out for an Elite. The Escape gives no data other than compliance hrs. where the Elite gives therapy data on the display screen and if you get the reader and software you see a better picture of your therapy and can fine tune it if needed.

Good sleep is great.

Fred

edit: I will be windy........

[Shrouded]

I just read your post and have to respond. Been using APAP since December and this is my first posting on the board. I've had a difficult time getting used to this whole thing also. I am determined to make it work, though - I know my life depends on it.

I'm on my 3d mask now - the first one I kept on for 3 nights and refused to take it off. By the 3d morning I actually had blood in it from the chaffing! The other masks were more tolerable but I'm still looking for good.

One thing that has helped me is the purchase of the "Aussie" heated hose since I had condensation in the mask that lead to discomfort, chaffing and leaks. I'm finding that with the hose heat I can now wear the swift lt, which I hated, and sleep all night. I've even started dreaming again!

I'm a newbe also. I've had all the issues others discuss on this board but I'm also having some success. I tell people that I feel I've lost 15 years!