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Sep 29, 2006
My husband's pulmonologist wants to put him on a Bipap machine...he is at 30 percent lung capacity right now. Anyway, we went for the sleep study and it was absolutely the worst night of our lives. He simply couldn't tolerate the mask at all...had a panic attack and I had to give him additional Zanex (sp?). Also dosed him heavily with Tylenol PM and additional Benydryl, and even then, he only slept a total of maybe 3 hours that night, and it was very restless sleep at that. He had horrible leg and hand spasms all night and moaned with every breath. My fear is this: if he can't use a bipap, what happens now? We haven't talked to the pulmonologist yet, but I thought I'd see what you guys had to say...any thoughts? I'm getting pretty scared now...but still trying to maintain the most positive attitude possible. Looking forward to your comments....thanks for always being so helpful...this is a GREAT forum!
Hi Pollyanna. I'll assume they tried a full face mask on him as you didn't specify. They cover the nose and mouth and can be claustrophobic. They make a mask that just covers the nose and it may be easier and you wear a chin strap to keep your mouth closed. There are also nose pillows that are two small plugs that fit in the nostrils and you wear the chin strap as well for them. Some people don't need the chin strap because they naturally clench their mouth shut during sleep. I'm surprised the people at the clinic didn't suggest these options after seeing his trouble. I always recommend you try the mask for a nap in the day time or just laying in bed not sleeping with it on first. That's what they did with me for mine. Then I stayed for 5 nights in the Rehab Hospital to get the pressures right and mask fit right. I tried 3 or 4 before I got the one I use now.
I think you need to get hold of your Respiratory Tech. or Pulmonologist.
Pollyanna...Its take some getting used to with the Bipap,and trial and error on masks...there are many options. Our RT wasnt at all knowledgeable about masks and just presented us two options and said my husband just wouldnt be able to wear his glasses anymore. Well, of course after checking all these great forums I learned alot and he has a nasal pillow mask that he loves and can wear his glasses.
But for sure I would think he would want to use it during the day until he gets the hang of it...also, there are quite a few settings on the bipaps and if one is off it can make them feel terrible..besides the in and out pressure there are settings for the lengths of time, etc. My husband started with it on a few hours at a time, and seldom made it through the night with the mask on for several weeks. But then within a few weeks I started having trouble with him letting me take it OFF! He realized how bad his breathing had gotten! He uses the Mirage Swift nasal pillow mask.
For masks there are full face, nose only, nasal pillows, hybrid mask (combines nasal pillows with mouth), and more.
Look at these sites and others for mask choices, and keep on trying and encouraging him. The bipap can give such tremendous relief.

good luck to you...Beth (CALS to husband Shannon, diagnoseded 8/04 at age 40)
Hi Pollyanna,

I wouldn't worry about him never being able to tolerate the Bi-Pap. He might be having trouble because his natural breathing pattern is fighting with the forced breaths of the Bi-Pap. I would help him get used to it in shorter intervals like Al recommended. Worst case scenario, when his own breathing gets weak enough that he can't move air when laying down, he shouldn't have anymore problems with the Bi-Pap.

Be careful with drugs like Benadril and Tylenol PM. They can dry out his secretion and cause mucus plugs that are too thick for him to clear with his weakened lung muscles. Drink lots of water.

Thanks to all of you for the information and advice. I think if they could have done the sleep study and tried the bi-pap mask and machine while he was in his recliner (which is where he sleeps...can't stand to be in a bed!)...we might have had different results. So perhaps when the doctor talks to us about the study, he can prescribe the machine and we can experiment with it here at home. He's having so much pain now, and we can't find anything to relieve it, and then he has a panic attack because he is struggling to's all a domino effect type deal. Each problem sets off another one, etc. Right now, the only way he can breathe comfortably is lying almost flat...head slightly his recliner. Sitting up makes it extremely hard and painful to breathe, and he begins to panic. It's driving both of us crazy! I'm just hoping that these painful spasms will become less painful as time goes do y'all deal with the pain? Anybody use quinine?
Thanks again for your replies...
Hi Pollyanna. I've used Quinine 300mg before bed for more than a year or so with Baclofen 10mg am and pm and it works pretty good for me. No more spasms or cramps in the night. AL.
Greetings all!

It has been awhile since visiting this site and I have missed the helpful discussions here.
Timing was right - I too find my breathing at 30% (100% last Oct) and the medical machine is currently not moving fast enough in my area! Have a bipap coming, can't believe how long things take! Not looking forward to the adjustment period - all I am reading are horror stories lately about some PALS inability to cope with a bipap?!?

I have also just read, from another PALS, that Canada is no longer doing trachs? Can anyone confirm, or deny, this rumour? If it is true - what do we do now?

Thanks for your responses!

Pollyanna, I sincerely hope your husband can learn to deal with the bipap real soon!

God Bless!
Hi Joel. Welcome back. I don't know about BC but haven't heard anything here in Ont.yet about not doing trach's. I'll check with Sunnybrook though and post it here.
Hi Pollyanna,
I also use the Quinine and the Balcofin that AL uses and it has helped greatly with reducing the spasms and the charlie horses, (as we call them down south, because you feel like you been kicked by a horse :lol: ), so I can get more rest at night.

I use to wake up screaming in pain and scared the devil :twisted: out of my wife, (might not have been all bad, ha ha), she'd shoot me for that one. With this combination of meds I have had maybe 2 spells of this in a month and I've been on the quinine for about 6 months now. Use to be, it happened every night.

I've also had to look around for a Bi-pap mask that will work for me since I have a full beard and mustache. And a very large head and nose. I wear size XXXXL hat. As pictured below. I finally found a full face mask thanks to AL"S suggestion that worked very good for me.

Another suggestion you may want to try, is to take the hose off the mask and have your husband wear it for short periods of time during the day while he is distracted watching tv or a movie or something. Gradually get him to try it a bit longer each time in case it is a claustrophobia reflex he is having to it. It's sounds more like the settings are not matching his breathing, but trying the mask just by itself to see if he is comfortable may help him get more use to wearing it.

I cannot sleep now without my Bi-pap. It helps to cover the noise of the tv when my wife is watching it and when she is snoring. Boy I'm sure picking on her today, oops. Love you honey.;-)

God Bless
Capt AL
Thanks again for the additional info, especially about the quinine. Have a call in to the doc right now, but it seems to take forever for him to call me back...I know they are busy, but don't they realize OUR problems are the most urgent? :-D ...Just kidding, of course!

We will probably give the quinine a try...after all, what do we have to lose? It's kinda like when I offer to use nasal spray so hubby can breathe better thru stuffy nostrils, and he says he doesn't want to get addicted....well, I say, so what? If it helps him breathe for whatever time he has left, so what? Am I wrong to think this way?

Blessings to all...
I have recently started on the Bipap, after being very skeptical about it. And I found it quite comfortable, and very helpful.........a lot depends on the device that you use, just the little thing that goes in the nostrils, or the mask. I've used it at night and when taking naps during the day for about two weeks now.
Good luck to you
Hi Pollyanna. I've been saying that since I was first diagnosed. What's the worst it will do ? Kill me? Ha Ha.
AZEVEDOC, thanks for writing. It is great to hear you did not have any problems getting used to the bipap. I am still waiting to get one, made many phone calls today to try to speed it up. I don't understand why our health care system in BC is so slow. Hope I can soon report the same kind of success.

By the way.....what kind, and model, did you get?

Hi Pollyanna, First, I want to mention that I believe quinine was being investigated by the FDA for possible cardiac problems, and not to use it for leg cramps. This was in the news the end of February 07. Double check with your physician about side effects. Second, I had read in a post that your husband had refused a feeding tube - did he ever change his mind? Just curious if he did refuse, is he able to eat and/or does he have any problems swallowing?

My mother is still refusing to consider a feeding tube and I don't think she will change her mind. I have very mixed feelings - from reading all the posts, it just seems like it would help and be such a good idea. However, it is ultimately her wishes (like your husbands) that decide how we go forward. I would hate to go ahead because we persuaded her, and she was miserable. An added dimension to this decision is she does not adapt to change well at all. Currently we have mom's weight stabalized, the secretions seem to be under control (she still carries a towell to dab every once in a while) and she is handling a soft diet fairly well. Always good days and bad.

Good luck with the bipap!
Since we are talking bi-pap, I have a question, the ones already on bi-pap Do you wash your hoses out every 24-48 hrs. Do you get hoses & filter replaced every month. They told me new hoses & filters every month & new face mask every six months. Just wondering if we all get the same info. or not. Rhonda
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