Bipap

[Luesco24]

Just got a Bipap machine, when I go to try to sleep breathing get difficult. Daytime breathing is good, have 68%. Question is I read that I am suppose to start using the Bipap machine when my breathing gets under 50%. It was setup according to my breathing height and weight. Been trying for about 20 minutes each day just to get use to it, problem is after I get the mask off I feel like hyperventilation hard to go back to normal. IS it true the more you use the machine start with a few hours each day eventually end up using the machine 24 hours a day. Planning to use it only when I need it when my breading falls to 50%. Thank you in advance. I have a directive that don't want breathing tube and feeding tube, Is it ok not to use the Bipap.

 

[WendyWooG]

How you use your bipap is basically down to you and your respiratory specialist.

My breathing is nowhere near as low as 68% even but i was getting sleepy and having headaches so was started on it. My specialist feels the earlier you have access to it the better. My instructions are to use it as and when I feel it's necessary. He said that this illness can change quite rapidly and I should judge for myself. I go in to a breathing support clinic every three months for breathing review and to check my settings are right. It's a good idea to either get very experienced with your machine settings or build a good regular relationship with the clinic as far as adjusting them goes. At the moment I use the machine over night as and when I feel I need it. I find I have lots more energy and am more awake the next day if I use it. I don't tend to need it during the day.

Laurie has provided some wonderful advice on here on various posts about bipap and settings so it's worth doing a search on bipap and having a read through.

Wendy

 

[Fgomez]

The best time to use the BiPAP is during the night. The BiPAPs have a back up rate that will assist you when you are breathing shallow or in case you are skipping a breathe. Normally the diaphragm is weaker and you are on your back usually is harder to breath and the BiPAP will help you. You can use the BiPAP during the day to get use to it or when you feel short of breathe. There are BiPAPs with AVAPS mode which only give you the amount of air you need to reach the target tidal volume.

 

[edschia]

I got a bipap a few weeks ago and was unable to use it at night. It freaked me out and I was pulling it off. The rep who dropped the bipap at my house told me that I had to use it at least 6 hrs in a 24 hr period or medicare would not pay for it. Honestly I was hyperventilating. I am no stranger to medical tests etc. I had a heart attack, stroke, pacemaker, kidney failure w/dialysis (for only a month bc kidneys came back) etc, etc. But this is unnerving me. I am using the bipap 4 hours a day and sometimes a little more. Has anyone ever refused to use it at all? I do not intend to use a feeding tube or ventilator. Thanks for letting me vent along w/u.

 

[WendyWooG]

Edschia
What type of mask are you using? They let me try out a few. I didn't like the covering ones but I don't have any problems with the nasal pillow mask. It seems to make a big difference.

Wendy

 

[Luesco24]

I am using the mask that cover nose and mouth, I am going to check the setting because sometimes when I am exhaling the machine goes the opposite and try to push air.

 

[lgelb]

Fgomez, you are incorrect on several counts. There is no magic "best time" to use BiPAP; it is based on the PALS. While lying down can make breathing harder, as can deeper sleep, some people breathe harder during activity such as dressing and eating.

The diaphragm is not the only muscle used in breathing and in some PALS other muscles are weaker.

Not all BiPAPs are set with (or even have) back up rate capability.

AVAPS is often set with an incorrect target volume; you cannot trust it blindly, and it needs to be adjusted as the disease progresses.

May we ask what your relationship to ALS is?

 

[lgelb]

Luesco, the "50%" is like saying, you should fill your gas tank when it gets low. It's not an exact thing. If the machine makes you feel worse after using it, either you need it more than you are using it or it is not set up properly. What kind of BiPAP do you have and do you know how to check the settings?

Some PALS end up using it all the time, others never use it during the day, just as some PALS have more movement than others at the end of their lives.

The one thing we do know is if you don't use it when you need it, however long you live, you will be less comfortable in your remaining life.

Best,
Laurie

 

[lgelb]

Luesco, sorry I had not read all your posts before writing mine.

If the machine is not synching with your breathing, that is pretty easy to fix. Some settings to look at depending on your machine are Ti [duration of a breath; may be one number for the backup breaths only or min/max for all], trigger [starting the next breath]/cycle [moving from breathing in to breathing out] sensitivity, AVAPS rate (how fast the machine jumps in to achieve your target volume, if one is set) and the backup rate, if any. If you have any "auto" settings for trigger, disable them so you can set everything manually.

Let me know if you need more help.

 

[Luesco24]

Yes I need your expertize I am going to see what kind of settings and the kind of machine I have. You are right about I get tired just to dress, can do no work at home anymore, still can do most of my personal hygiene get tired just to do that but still can do it. I would like to use the Bipap machine only to sleep not during the day. I will write back what kind of setting I have. Thank you. My name is Luis.

 

[Luesco24]

Last breathing test was done last month and No Dyspnea during the day, Orthopnea at night. Machine is Trilogy 100 with humidifier and mask that cover nose and mouth. It was setup according to Doctor prescription. Any help you can give me. Appreciate.


Dual prescription -off
Mode - Avaps-AE
Avaps rate 1.0 Cm H2o
Tidal Volume- 450 ML
Max pressure- 25.0 cm H2o
Pressure support max - 18.0 cm H2o
Pressure support min -10.0 Cm H2o
Epap Max - 4
Epap Min - 4
Breath rate -10 BPM
Inspiratory time-0.9 seconds
trigger- auto
rise time- 3

 

[lgelb]

Luis--

Height and weight? Smoking history? Other lung problems?

Here are some things to consider for a first pass.

First it's best to change the trigger from "auto trak" to "flow trigger," which gives you two additional settings: trigger and cycle sensitivity. For trigger sensitivity, I'd start at 4, then adjust up if breaths are starting too soon and down if you're starved for air to begin. For cycle sensitivity, since the machine seems to be going too fast for you, I would start at 20% and go up [if the machine is dropping the pressure for exhalation too slowly] or down.

I would also change the backup rate to 8 and the minimum pressure support to 4, for starters.

Your Ti is lower than most people would have for the backup rate, but the goal is not to trigger the backup rate -- still, you could change that to 1.3 just in case.

 

[Luesco24]

Height 5.6, Weight 169 pounds keeping steady. Most of the weight stays in my belly, kind of wonder if it I is bad for my diaphragm. Eat high calorie diet and it give me extra energy. Thank you, amazing you answer so fast.

 

[lgelb]

Unavoidably, weight in ALS often ends up in the middle because of limb atrophy.

If you are only 5"6" (or even if you meant 5.6 feet, which would be 5'7"), I would drop the target volume from 450 to 400 once you have the timing aspects of the settings comfortable, as that is a large target for your size. You have room to go down from there or settle on what is comfortable.

 

[Jlynn]

Edschia, My brother has opted not to have a feeding tube or ventilator as well and he does not use bi-pap. I'm curious as to what Laurie feels but last week I had to take my brother to the local hospital as he had gone the night having trouble breathing. This happens often but usually evens out but it did not that night. His PCP gave him low dose morphine under the tongue. It worked. He will not take it unless it lasts like it did that night.