Using the Bi-Pap Machine [Archive]

BethU

07-27-2009, 01:46 PM

I adapted much more easily than I expected ... I had planned to really resist using it, but found to my amazement that I could sleep just fine with it.

HOWEVER, I am still struggling 7 months later to get a good fit on a mask. The RT who delivered it said "there is always some leakage of air with full-face masks," so I accept that, but think the fit should be better than what I have.

I do feel better in the day when I use it all night long, but haven't had the big pay-off some people experience in extra energy, etc.

My big problem is the sore on the bridge of the nose, where the gel ends. I ordered a "total face" mask that fits across the forehead, down the cheeks and under the lips, and it is wonderful ... such an improvement! ... but I can't get a good seal on it, either. I think this mask would be hard for people with claustrophobia, but it works for me, and lets me read while wearing it.

My second big problem is when I wake up during the night to go to the bathroom or because the mask has shifted, and I'm too sleepy to fuss with getting it back on, so I don't get the full-night effect.

To sum up, I can sleep OK with or without it, but feel better during the day if I've worn it all night. I think it's worth the struggle to adapt.

GlenBrittle

07-27-2009, 03:53 PM

HOWEVER, I am still struggling 7 months later to get a good fit on a mask. The RT who delivered it said "there is always some leakage of air with full-face masks," so I accept that, but think the fit should be better than what I have.

Thats BS. Do not accept that. It is the most important piece. There are so many out there. Are you using just the nose or a full face ?

My big problem is the sore on the bridge of the nose, where the gel ends. I ordered a "total face" mask that fits across the forehead, down the cheeks and under the lips, and it is wonderful ... such an improvement! ... but I can't get a good seal on it, either. I think this mask would be hard for people with claustrophobia, but it works for me, and lets me read while wearing it.

DOH - should have read the whole post . What is the issue ? Is your skin oily? Do you have it on too tight ?

My second big problem is when I wake up during the night to go to the bathroom or because the mask has shifted, and I'm too sleepy to fuss with getting it back on, so I don't get the full-night effect.

To sum up, I can sleep OK with or without it, but feel better during the day if I've worn it all night. I think it's worth the struggle to adapt.

Putting it back on is the hardest habit to break. It looks like you have accepted that it is better when worn. You have been sleeping many yrs without it, it takes time to break old habits.

I have not seen the full head style of mask , but use the Ultra Mirage II full face. I have been wearing a mask for over 7.5 years now. I have claustrophobia, and the first night was a biatch.

Beth , send me a PM if you want to chat offline about this.

Glen

brooksea

07-27-2009, 07:30 PM

Beth,

My husband has a "quick disconnect" that allows him to keep the mask on. That worked well in the beginning, but now with hand and arm weakness, he has problems and just rips the whole thing off. He too, usually doesn't put it back on unless he allows me to do it.

With all the technology out there, you would think there would be an easy solution.

As to having problems using the BiPap - settings may need to be adjusted. And I know it does take getting used to.

BethU

07-27-2009, 10:15 PM

Thanks, Glen and CJ ... I think I've solved the mask problem. (I'll find out tomorrow morning.) My caregiver and I camped out at the vendor's office today, and finally got fitted correctly, I think.

I use the full-face mask as I can't keep my mouth closed any more. I thought I needed to have my jaw shut at first, and tried chin straps, which didn't work. I could keep my jaw closed, but not my lips. But when we breathe, it all goes to the same place, whether it is through the mouth or nose, so I hope I get the same benefits with mouth breathing.

I wish there were some kind of liquid gel seal that you could put around it to seal all the little leaks. I think the sore spot on the nose is from having to cinch it so tight to get a seal.

Thanks for the feedback!! I hope I'm near a solution.

GlenBrittle

07-27-2009, 10:49 PM

Try this for the little leaks .
Put the mask on , and where-ever there is a leak , pull your skin outwards and let go. When your skin retracts , it should pull the membrane inside a bit more.

Also , I read somewhere in the forums , that someone found little gel strips that you can place over the bridge of your nose to alleviate the sores. I have not needed them yet , I only have a red spot , same place as my glasses sit. Its not sore , so I don't bother with anything for it.

Happy Dreams

Glen

joelc

07-27-2009, 10:53 PM

You guys are bringing back so many memories! I am soooo glad I now have a vent as none of these problems happen. LOL.

GlenBrittle

07-27-2009, 10:54 PM

show-off !

joelc

07-27-2009, 11:01 PM

To be perfectly honest, if more people believed me and knew vents were this comfortable in relation to a bipap everyone would get one! I am not stretching the truth either - my experience has sincerely been this way.

GlenBrittle

07-27-2009, 11:08 PM

I have been weighing the pros and cons Joel. The biggest con is that I am still working , and don't want the connection just yet. Maybe when its time for the chair , I will reconsider.

I am in the running for a peg though. First consult with surgeon is Thursday.

Glen

joelc

07-27-2009, 11:14 PM

Good Luck on Thursday! That was also a cake walk for me.

I think a lot of it has to do with a persons attitude. I did not think it was going to be a big deal and it turned out not to be.

If you are still working then it is not time. You must be able to go all day without your bipap then?

GlenBrittle

07-28-2009, 12:05 AM

Yes , I only use Bipap for sleeping and naps as I also have sleep apnea .

Glen

julez

07-28-2009, 10:12 AM

Thanks for the response everyone! mom is going in for PEG tube next week....

GlenBrittle

07-28-2009, 10:16 AM

To get the thread back on topic

Beth,
How did the mask work last night ?

Glen

Blackpool

07-28-2009, 11:51 AM

I don't mean to but in on your thread Beth,but I talked to my pharmisist yesterday and she suggested I take a lorazepan 0.5 and 1 regular asprin before bed. I slept for 3.5 hrs with the mask, slept 2hrs without woke up and put the mask back on for 2 more hours.It is the aches and pains that are waking me up not the bipap. Maybe your Mom could try a low does relaxant.

BethU

07-28-2009, 12:50 PM

Thanks for asking, Glen.

I THOUGHT it was working great. I took it off at some point, but was awake enough to put it back on. Then when I woke up this morning, it was on the floor again. Don't remember taking it off the second time.

There was no air leakage, but it was very painful across my cheekbones, and I have big red welts down my cheeks. I think I've tried every model out there, and this seems to be a good fit, except for cheeks, so somehow I've got to make this one work. (And the total face mask, too, by far the most comfortable of them, if I can fix the leaks.)

There is nothing about this stinkin' disease that comes easy! (except the PEG) :lol:

thelma313

07-28-2009, 09:54 PM

My Dad has a truly terrible sore on the bridge of his nose. We have tried everything. Now it just won't heal and it is very unsightly. My poor Dad! We've tried putting the band-aids on is a cross formation like Beth suggested. The problem is that it just does not have time to heal during the day. I will suggest a full face mask. I don't think my Dad is claustrophobic so hopefully he'll go for it.

Today he got his wheelchair. It was hard to see. I was hoping this day wouldn't come for a while but sadly my Dad's ALS has progressed. He's still taking it like a champ though. Not one word of complaint and still the smiley sweet Dad that we all love. I admire him so much!

sharonca

07-28-2009, 10:00 PM

Does anyone use the nose pillows? I saw a pic of a new nose pillow "mask" and it looked really comfortable. Don't know how I would keep my mouth closed with that either.

Beth - with the full face mask does your mouth dry out?

BethU

07-28-2009, 10:09 PM

Sharonca ... no, in fact just the opposite. My mouth gets dry from the mouth breathing (and the Scop patch) and my lips are dry and cracked afternoon and evening, but because of the BiPap humidifier, I wake up with a comfortable mouth and my lips are soft and "normal" for several hours. It is a lovely little side effect.

tdamess

07-29-2009, 09:37 AM

hi the orcal mask only covers the mouth works wonderful for me air goes directly to lungs as i am a mouth breather , i do use the strap to hold mask as you dont need to but i do not like anything in my mouth if you can stand it you do not need any head gear you can also go to youtube type in orcal mask and see how it works without mask good luck I adapted much more easily than I expected ... I had planned to really resist using it, but found to my amazement that I could sleep just fine with it.

HOWEVER, I am still struggling 7 months later to get a good fit on a mask. The RT who delivered it said "there is always some leakage of air with full-face masks," so I accept that, but think the fit should be better than what I have.

I do feel better in the day when I use it all night long, but haven't had the big pay-off some people experience in extra energy, etc.

My big problem is the sore on the bridge of the nose, where the gel ends. I ordered a "total face" mask that fits across the forehead, down the cheeks and under the lips, and it is wonderful ... such an improvement! ... but I can't get a good seal on it, either. I think this mask would be hard for people with claustrophobia, but it works for me, and lets me read while wearing it.

My second big problem is when I wake up during the night to go to the bathroom or because the mask has shifted, and I'm too sleepy to fuss with getting it back on, so I don't get the full-night effect.

To sum up, I can sleep OK with or without it, but feel better during the day if I've worn it all night. I think it's worth the struggle to adapt.[/QUOTE]

tdamess

07-29-2009, 09:50 AM

oh now this works better ( quick post) if anyone would like to know thier is a mask called orcal i use it because i couldnt stand the full mask it can come with one strap some people like it with no headgear but i can not stand anything in my mouth, another thing is the air goes directley to your lungs works much better , i am also a mouth breather so if you are not you may have to wear a nose plugs little white things till you get use to breathing by your mouth .
you can go to youtube type in orcal mask and see how it works you may then see why i use the strap but no will get my orcal mask away from me it works really good much better than a full mask or the little tube for the nose good luck all hope i helped a little

GlenBrittle

07-29-2009, 03:28 PM

Has anyone tried a "Mirage Quattro Full Face CPAP Mask with Headgear" ???

Its works great with bipap also.

I have zero leakage with it . The quick disconnect clips on the sides helps for easy removal and re-apply.

Glen

DgtofTNfan

07-29-2009, 05:54 PM

Marjorie R. Wilcox

07-29-2009, 06:25 PM

I don' t know why, but Rick has never had any trouble with his Cpap and now his Bipap. He's had a machine two years now....no sores, no leaks, no replacement parts. The pulmonary specialist says they are very compatible with each other from the first night! Good something is going well. He wouldn't dare even take a nap without it... he breathes so shallow or not at all without it.

GlenBrittle

07-29-2009, 07:03 PM

Mirage Quattro Full Face

Glen I think that is the mask my Dad has. It was working great and then it got a tear in the seel. It was replaced with the identical mask but now they have to put a gauze/cotton strip above his eye to get the good fit. I guess if you need a tight seel even a slight manufacturer variance is noticeable. I am hoping that he can break it in - or can that even happen?

There should be a twist knob in the center (between the eyes and just a bit above) that will allow you to adjust how far the top is away from your nose , cheeks etc.

When I went to get my BiPap , I took my cpap mask with me. The therapist had not seen a mask like mine. From what I saw , it seems that the defaults for BiPap orders are a couple of upgrades behind.

The new seals are so soft , there is no breakin . I actually like when they were a little tougher.

Glen

DgtofTNfan

07-29-2009, 07:27 PM

There should be a twist knob in the center (between the eyes and just a bit above) that will allow you to adjust how far the top is away from your nose , cheeks etc.

Just checked with Dad and he said the mask is fitting better now with no gauze - he said he worked with some adjustments and then the straps and it is better "centered" now - likely what you just said. He is going for an eval for cough assist next Monday and was told to bring his bipap mask with him as he may be able to use it.

GlenBrittle

07-29-2009, 07:28 PM

Fantastic !!!! Tell him to make sure its not too tight. Ya , I took me a while to believe it too.

Glen

sharonca

07-31-2009, 11:36 PM

Thanks for the name of the mask, Glen. I googled it - looks great. I think this might help with my appetite problem as well. My nutritionist thinks the dry tongue has affected my taste buds.
Sharonca

BethU

08-01-2009, 10:23 AM

Sheronca ... A couple days ago, I gave you an answer on another thread about the dry mouth on awakening with a full-face mask. I said I didn't have it, but since I posted that, I have awakened each morning with a VERY dry mouth. I don't know if I just wasn't paying attention before or if my new mask, which I got this week, is causing it.

Anyway ... wanted to correct the record!

GlenBrittle

08-01-2009, 03:53 PM

Beth , though impossible as it may seem , you sometimes need to keep your mouth closed.

LMAO - Yes , mine dries out too . I keep water near my bed just in case.

thelma313

08-01-2009, 07:33 PM

I'm happy to report my Dad finally got a mask that is not irritating his nose and the sore is healing... to bad he has a nasty nasty wound on his head now though. Poor guy! I'm sure it will look better once the stitches are out but it gives me the willies right now.

GlenBrittle

08-01-2009, 07:59 PM

thelma313

08-01-2009, 08:19 PM

Well he'll be thrilled to learn that! Thanks Glen. ;)

rose

08-02-2009, 07:03 PM

tdamess,

I tried the oral mask, and could not get past the dry mouth issues with it. I have a heated humidifier, and kept it set to the maximum. I tried (I think) as hard as it is possible, to adjust to it and the dry mouth. The other problem is that I'm not a mouth breather. It was hard to have my mouth open, and the first few nights my jaw during the day was painful because of it. I really liked how quiet it was, and no blowing air to blow on someone else while sleeping.

I really wanted it to work, because, if for vanity reasons alone, it really does not have a big impact on how a person looks, as just the mouth is covered, and there is only the single strap (which the manufacturer says is optional) so the headgear part is pretty much invisible. But, I have enough soft palate weakness to where I could not train myself to sleep without the nasal plugs, if I did not wear them, air leaked out of my nose., and, as I stated, I could not overcome the mouth dryness.

I then went back to my nasal mask. The problems I've had with it from the start does not have to do with fit, but because my nose will start to itch really intensely after wearing it for a while. Then, of course, I can't reach it to scratch it, because its covered, and by time I lift up the edge to rub my nose, I'm either awake (a bad thing) or it wakes Don, from the roar of rushing air.

Then, I tried just raising up the head of my bed and sleeping without the bi-pap when I first got the puppy, because I was up and down so many times in the night with him anyway, but, it caused such horrible headaches.... I went back to the nasal mask at night, and during the day when I'm really feeling wrung out, and need a "hit" of good breathing, I wear the oral mask, because it does not interfere with reading, etc.

After talking about this at my last clinic visit, they want me to meet with another RT and try another nasal mask, but I've not followed through yet. Frankly I'm not wanting to look like Miss Piggy in the bedroom at night (nasal pillow effect) if I can find a way to move past the itching when wearing the nasal mask

I hope this topic continues to be discussed. The things I know for certain is that having a mask that fits correctly is really important, and using the bipap if you need it, is one of the best things a person can do to help themselves.

(does anyone else have problems with the nose itch?)

GlenBrittle

08-02-2009, 11:15 PM

Yes , my nose itches sometimes too. Most of the time , its a cat hair. I just pop the mask off , rub the hair off of my nose , much in the way the three stooges would rub their faces, and put the mask back on.

Question: You say that your vanity keeps you from wearing a full face mask. Yet you continue to try fuss and fidget with the nose or oral masks. Why ?

I put to you this thought. If you are still tired in the morning , you will look tired. If you get a full nights rest , you will looked refreshed . Why not try the full face mask?

Glen

rose

08-03-2009, 09:25 AM

LOL, no, vanity isn't keeping me from the full face, it was the nasal pillows that gave me the miss piggy look, and even that wouldn't have stopped me from using it if the mask would have worked for me. I guess my nostrils aren't the exact same size, and I had leakage on one side, and if I tightened it up enough to keep that side from leaking, I kept getting an open sore under my nose from the pressure, and my nose would hurt the next day.

What has kept me from trying the full face mask is that I don't see how it would be any different as far as the itching problem. Its making me crazy(er).

I think its somehow connected with the wind inside the mask... its the outside of my nose, not in it, and yeah, like a cat hair, or any hair would tickle and make it itch. After my "hell tour" trying to use the oral mask with the associated mouth dryness, it seems like the itch is a small price to pay to feel more rested. Last night I left it on all night, but I still feel awful this morning, most of the time it does help tremendously with fatigue though.

BethU

08-03-2009, 01:08 PM

Beth , though impossible as it may seem , you sometimes need to keep your mouth closed.

Easy for you to say, EverReady, tell that to my missing lip seal! :lol:

BarryG

08-03-2009, 01:27 PM

A new nickname for Glen? EverReady the Energizer Bunny! I love it! :-P

Barry (another person who just can't keep his mouth shut)

mare

08-03-2009, 04:23 PM

Glen: EverReady- Energizer Bunny !?!

I'm not touching that one, even with Al's 10 ft. "Pole" !!!

BarryG

08-03-2009, 04:39 PM

Ok mare, he is a REALLY BIG bunny! And you know, we don't pick our nicknames they just appear of their own accord. If the shoe fits....

mare

08-03-2009, 05:47 PM

BIG, BOISTERIOUS LOL !!!

Glen??? Wanda???

tdamess

08-03-2009, 05:59 PM

rose so sorry it wasnt for you the only other one i know of is the one my hubby has it just covers his nose but dont know what it is called you could ask the therpist if they know sorry it only covers the nostrials not the nose gotta get my words right. i wish you the best

GlenBrittle

08-03-2009, 07:08 PM

OMG - Ever ready ? a BIG BUNNY ?

I have been called a big teddy bear , but never a bunny.

I was Lithium charged for a while. And the thought of ladies picking me up and holding me close to their chests has merit.

Glen

rose

08-03-2009, 07:23 PM

... I thought Al had an 11 foot pole.....

Glen, love the avatar. The shoe definitely fits (but you're not Cinderella)

tdamess, I went back to using my nasal mask which just covers my nose. Took a nap today with it and I didn't wake up itching once, but then it was only an hour.

GlenBrittle

08-03-2009, 07:31 PM

Rose,
No that shoe doesn't fit. I need size 12 EEEEEE .
But I will take an idea and have some fun with it.

Does it itch where the pillows make contact ?

Wabbit

rose

08-03-2009, 07:41 PM

Wabbit (I LOVE it!!!)

No pillows, its a nasal mask, a triangle which covers my nose. It fits well, too. There is a picture of it on me in that one album on my profile page where I show the insulator for the hose.

.... so, does Wanda like bun-buns?????

JUDIEMATUL

08-05-2009, 10:44 AM

Hi there, my name is judie and i am new to your club. I must say this has been an very unexpected journey as i have been battling an even more rare bone cancer for 9 years an should not be here now , but here i am. My cancer is one of 300 in the country an is horrible so why als? just lucky.I have had 12 surgeries and been in the hospital 29 times so i am a little blue. We are giving up our home in Lancaster and moving tp N.C. where our family is. I have owned my own business here for 31 years and all my freinds just cry but this is life. i started with drop foot we thought came from radiation but wrong, now i do not speak wee and i am very tired. i think predisone helps me some for energy and pain. i also have fibrmyalgia. i reaaly respect your views and i read this everyday. Thank you for reading my story so you will know me when you see me post. thanks, judie:confused:

thelma313

08-05-2009, 11:59 AM

Judie, wow. All I can think is "not fair." I am so sorry for your diagnosis. You have got to be the strongest person on the planet right now. I am glad you found this forum so welcome and know that we are here for you every step of the way. You will be supported here and this forum is rich with members who are wise and compassionate and incredibly helpful. I wish I had some magic words for you but right now all I can say is you are not alone. My heart goes out to you...

BethU

08-05-2009, 02:35 PM

Judie ... I'm glad you found us. Lord, what a pile you've got on your plate!

I hope the cancer is in remission and you can devote your strength to battling ALS. Lean on us here in any way you can.

God bless.

JUDIEMATUL

08-05-2009, 04:56 PM

i am just over whelmed, how do i turn off the cancer fear and welcome the als... i do not know what to expect and ya'll are so on top of things. people just tell me your gonna die!!!I am trying rilutek, supplements, vitimins and on an on, tell me what you can please, judie

BethU

08-05-2009, 06:52 PM

Judie ... first thing my clinic neuro told me is to keep my weight up. She said keeping your weight stable has been proven to be more effective than anything else in slowing progression.

It's hard to do with ALS, even when you don't have bulbar (mouth and throat) problems, because somehow, ALS seems to affect metabolism. (This last statement is my guess, and a recollection of stuff I've read, so don't know if it's true or not.) But it is work to keep the weight on.

I don't know if you have lost weight from chemo or not, but this is something that can help in the fight.

A lot of ALS patients take Q10 supplement.

GlenBrittle

08-05-2009, 11:54 PM

Hey Judie,

Look at the shit you have been through, and you are still going. OMG you are an amazing woman to have made it this far. A lesser person would have succumbed already.

So now they have said you are going to die. But they don't say when. Its an average . They don't know. So , turn off those fears. Look in the mirror. That's a strong woman looking back. You passed average many years ago .

Just say F**K It and have some fun.

BethU has it correct. Enjoy your foods . Eat Healthy , eat lots. I use the 80/20 rule for food, you might as well have 80 percent is good for me , and that other 20 percent is the stuff that really tastes good. Ewwy Gooey Greasy Yummy food.

A positive attitude and keeping your energy up is important.

Please feel free to ask any questions you may have. Most of us are not doctors , but have enough experiences to give you valid options to help you through.

Glen

Tich1

08-10-2009, 09:26 AM

Hi , while I was in hospital the respiratory team showed me a bi-pap machine and tried a mask on for size and demonstrated the nose one but I was given mask as I tend to mouth breath. I , however , have had to say no to having it because I drool way too much , and also have frequent jaw clamp spasms . The doctor said she will manage my breathing as needed as and when with oxygen and morphine .
Sounds a bit scary but , as with this disease , I will take whatever it sends my way . xxx :-)

Tich1

08-10-2009, 09:46 AM

A special word for Judie , though I can't find any other than to repeat that it's not fair , life is here for us to tackle as best we can honey , and some seem to get more to grapple with than is a fair share . Welcome to this forum honey , I am fairly new and I find great support here from such lovely people , and we are all going through each day facing each new symptom and facing it head on . As others have said , we lean on each other and together we are strong :-)
x