Cpap? Bipap? - Page 3

GlenBrittle · 11-14-2009, 08:11 PM

Awwww ... thats not nice .

Try this first. Sit on the side of the bed , and make sure you are relaxed and not breathing heavy.

Now , put the mask on. Breathe regularly. Big slow breathe in , and let it out slowly. Repeat.

Now that you have that under control , turn the machine on. Continue to to take a big slow breathe in and let it out slowly if you can.

Continue this until you realize that you can control the rate of breathing with the machine.

Now hold your breathe and wait for it to push air at you. If all is well , it will seem like a good time before it turns on.

You are now in control.

The key is to a) turn it on while relaxed and b) know that you can control it.

I hope this helps you.

Glen

rose · 11-14-2009, 08:40 PM

Linda,,Re: adjusting to the bipap; does your machine have a "ramp" option? If so, hopefully your RT has it set at the longest (most gradual increase) time. If you've fallen asleep and it wakes you because of all the wind, hit that ramp button again, You can do it as many times as it takes. My machine has the ramp option that is as long as 4o minutes. I don't know if this is common, but I do know that at first the RT did not have it set to ramp slowly, and the next one caught the problem and adjusted it to be more gradual.

Keep at it, you'll feel so much better. I look forward to putting it on, and use it some days for a bit in the afternoon to help with fatigue. BTW, about the way all of the equipment looks, I understand, its not homey. I did make an insulated cover for my hose, it was not for decorative purposes, but rather to help prevent "rain out", but the cover does take away some of the sterile medical feel as a secondary benefit. There is a short photo album on my profile page which shows the hose cover. If the album does not show up, look for the blue hyper link which says "show all albums".

handinhand · 11-14-2009, 11:55 PM

Thanks for your help and understanding. Today has been one of my worse days sense I found out about this dreadful disease... I will keep using the machine and I will try what you suggested...I put it on for an hour this afternoon. It was a little better. Tomorrow is a new day... right? It will have to better than today??? Rich is home tomorrow so that will be good ... Hugs to all three of you... Linda

pvale · 11-16-2009, 02:43 PM

Well, it's Monday, and I called around, sure enough, I had fallen through the cracks, and got things going. My Medical Equip. company will be here Wednesday at 1:00PM.

On a side note, now that I've got the LTD ins. Co. (AIG) starting to send me money this month, and got my SSDI and Medicare started, life and worrying about this stuff has seemed to slow down considerably. Big adjustment to going from the scurry,scurry of work to this laid-back lifestyle.

Perry

tdamess · 11-16-2009, 03:44 PM

good glad to hear ,and very glad you can relax

dixie · 11-16-2009, 03:55 PM

Hi Perry.

Glad to see things are finally working out for you, both equipment and financially. It is amazing how cracks appear in the system. I would bet that if the shoe was on the other foot the person involved would not let it happen.

Take care Perry.

Cowboys never quit we fight to the end. So watch out ALS.

handinhand · 11-20-2009, 01:24 AM

I have been using the bipap for 6 nights now..... Yes, it is getting easier...thank goodness. I did just what you said Glen. Thanks, that did help.. Rose I also hit the ramp button. It must not be set because it didn't do anything. I am calling the nurse that helped me tomorrow and ask her about that. I still take at lease an hour or two to get to sleep. This morning was the first morning it was getting light outside when I took it off. Making progress..Yippie!!!! Things aren't so bad after all..smile!!!! Linda

indigosd · 11-20-2009, 06:12 AM

So good to hear about success!

paleshia · 11-20-2009, 07:01 AM

linda, thanks for sharing. i am trying to get prepared for this step and you have been really helpful.

pvale · 11-20-2009, 05:05 PM

Boy handinhand, I hope it gets better for me. My settings are 4 and 20. First night, I ripped it off about 12:30. and last night, it was 2:00AM. I've been swallowing air and feeling like I want to vomit. I wake up with panic feelings and rip the thing off.

Hope it gets better.

Perry

Katie C · 11-20-2009, 06:25 PM

OK... picked up Glen's "study bipap" today for attempt 3. I think part of the problem is going to remain getting him to relax and let the machine do the work. Another area where the FTD cognition issues just get in the way.

sjpowers51 · 11-20-2009, 08:33 PM

The FTD makes the bi pap very difficult - keep us posted katie. I feel terrible because we just gave up... my husband just could not relax and fought it constantly even with sleep meds we couldn't get thru a nite...

handinhand · 11-20-2009, 10:01 PM

Did you read Glens remarks ?? I was so upset the first night. I did the same thing. I couldn't get it off fast enough a few times...Day two..... I sat on the bed and I waited until my breathing was good. Then I put the mask on and realized I can breath with it on if I just relax. OK now I started breathing the way I normally breath. then I turned it on. I practiced that a few time during the day, knowing I wasn't going to go to sleep with it. Just a practice test. In the afternoon I was getting a much better hang of it,so I tried laying down and taking a rest. I could even breath in longer than the maching and I can also breath out longer than the maching. No one could have been any more upset with it than I was. If I can do it anyone can.. Good Luck.. Let me know???? L

Big Mike · 02-02-2010, 05:34 PM

I think I may have to retract a comment I made a while back about cpap being okay in some circumstances for als. My FVC went down 20 points in the last 6 months (80-60%) since being on cpap after remaining stable for the 6 months previous to that! I was using the cpap for upper airway resistance syndrome, but it is clear now that the intercostal muscles and diaphragm are weakening. I'll be discussing the matter with my pulmonary doctor next week.

pvale · 02-02-2010, 07:39 PM

Well, since this thread bubbled onto the front page, Ill update my Bipap experience. I'm generally wearing it all night now, settings are 4 and 16. Some nights it blows air into my stomach and forces me to get up to releive it. Happened last night, so I got up about 1:00AM and came in here and played World of Warcraft in the wee hours. Biggest problem I'm having is nasal passages clog up with thick mucous and I do a lot of mouth breathing. So mouth gets dry, and that may laso have a bearing on air going down esophagus. Open to suggestions on what to take to keep nasal passages open and lessen mucous.

Perry