PALS doesn't like BiPAP

[weavie]

My mum got a BiPAP machine (with nasal mask) last week and is trying to get used to it, but doesn't like it and feels as though she is suffocating. She has tried it for 10 mins a day and she sits and watches the clock the whole time, looking terrified.
Will her life be shortened if she can't adjust to it? The idea was that she use it overnight for sleeping with.
I read posts here where PALS are using these ventilators almost all day.
She also has the problem of needing to spit secretions almost continuously, so keeping her mouth shut for the nasal mask to work, is almost impossible.
Does anyone have any suggestions how this could work or does this mean it is not going to be an option for her? Thanks

 

[dalvin]

I would check with the people who provided the bipap, they have different styles and manufacturers of the masks available. Some that cover the nose while leaving the mouth clear. The comfort level on the different masks also varies. The one I have at home is fairly comfortable but if I thought the one they used at the hospital when I had my peg surgery was all there was I wouldn't want to use it either. It was actually painful on my nose. Like I said though, your provider should be able to come up with a solution that will fit her needs without being uncomfortable, physically or psychologically.

 

[Diane H]

Often the pressure settings on BiPAP are responsible for the feeling of suffocation. When first starting on BiPAP an ALS patient should have low settings; an inspiratory setting of 8 or 10 will give a comfortable breath. More importantly, the expiratory pressure has to low, about 4, to allow easy exhalation. If it is too high the feeling of suffocation comes from not being able to exhale before another breath is pushed in. After she is comfortable with BiPAP the inspiratory pressure can be raised as need.

Adjusting to BiPAP is scary at first and it is no wonder so many people give up on it. Until they experience a night of improved sleep and waking feeling good, the thing seems to be a pointless nuisance! I would continue having her wear it for short periods during the day. Wearing it at night, lying down, in the dark, and alone is a horrifying way to adjust! Try to distract her by playing cards, watching her favorite tv show, whatever will reduce her concentration on the BiPAP. A light dose of valium a little before putting on the BiPAP can be a big help in the adjustment and doesn't need to be used permanently.

Her mouth doesn't need to be closed constantly for BiPAP to help so she can spit as needed. There are medications that can be tried to reduce saliva as well as Botox injections into some of the salivary glands or a couple of radiation treatments targeted precisely at the glands to shut them down.

And, yes, not using BiPAP will shorten her life a little, but if she can't adjust to it and is miserable wearing it, prolonging that misery is cruel.

 

[adozi]

The settings on mine were too high. You may need to get the doc to prescribe lower settings. I also tried several different masks after the first one was terribly uncomfortable. I don't wear mine any more, but i wanted to let you know that it didn't feel like i was suffocating any more.

 

[weavie]

Thank you to everyone for their replies, I really appreciate your comments. Perhaps a lower inspiratory pressure might be worth a try first. I think it is currently set at 9. I will have to check the expiratory pressure. I will also try some diversion and distraction to see if that takes her mind off it. Mum was told to keep her mouth shut while using the nasal mask, so she sits with tissues constantly at her mouth to wipe up dribble. She won't be able to sleep if she feels like doing this all the time. Are the botox injections into the salivary glands painful? (sounds painful!)
So far, palliative care have not wanted to give her medications to dry up the secretions, saying it is better to keep them thin so easier to cough up. Also so all the other moist areas don't dry up too. Does anyone have any experience with either thought?
Thank you all so much for the support. Wish there was more that could be done, for everybody suffering this terrible disease. Breaks my heart.

 

[lgelb]

I would definitely try a full face mask -- might dry up the excess saliva and doesn't matter if her mouth is shut or not. Also, you might try adjusting the temperature/humidifier settings.

 

[BrianD]

Ask your doctor about trying atropine drops under the tongue for drying up the drooling some. I like this for me because it can be tweaked so easily to get a good balance, and a very localized effect instead of a drug you digest. You can start with say 2 drops in the morning and increase as needed.

 

[weavie]

Thank you Brian, I have never heard of Atropine drops for under the tongue. I will look into it.

 

[summerguy2007]

It took me 6 months to get used to it. My main problem was that I was afraid of it, all that air blowing into me. I didn't trust it to keep me breathing. Gradually, I developed a "comfort level" with it. I have a Resmed S9 with humidifier and full face mask. None of it is really comfortable at night but I need it so I use it every night. If you have any specific questions for me, I'll do my best to answer them. Using it makes my mouth and throat very dry and that aspect is very uncomfortable.

 

[texastracy]

It took me about 6 weeks to work up to sleeping all night with it. I, too, started with 15 minutes a day. My numbers were way to high for starting. So the resp therapist got the ok to lower them. That helped a lot. I use a full face mask. It took trying three different masks. After 3 months, I can sleep all night and I'm up to the settings tthat the doctor first ordered.

I had improvement in my sleep patterns, gained 3 pounds, and have more energy. I also have avoided a cold, I think because of the humidifier.

Tell your mom to keep trying. Play music she likes and rub her arm to soothe her. She will adjust, it takes time.

You are in my prayers,
Tracy

 

[Pkmado]

My husband has been having ByPap issues. He went in for a PEG and they tried to use it. His arms are paralyzed and they left it on him and left him alone. He panicked and no one answered his buzzer in a fair amount of time. He could not pull the mask off and they found him choking.
We have a friend nurse who had been insisting he use one. Then we have a visiting nurse who said she was taught Bi Paps with secretions are just not always comparable.
She checked with a DR who confirmed this theory. Also they thought the anxiety it created was not doing Phil any good.
Important to remember every case of ALS is different. What works for one maybe not so much for someone else. Check with your ALS team. Good luck.

 

[weavie]

You are all so kind to offer your thoughts. Mum has been persisting with the nasal mask for 2 weeks now and can now last about 30 mins with it on. She watches the clock until it comes off! She goes back to the centre in a couple of weeks, so will see if they can alter the settings. She is getting weaker and her speech is almost gone, very hard to understand her in the last couple of days. So sad.

 

[BrianD]

You should be able to change your own settings on your bipap, at least just to try it out. If you don't know how, ask your RT to show you. They may tell you they can't change it without doctor orders, which is true, but you are not bound by that.

I think you will get resolution quicker if you try some lower settings on your own.

 

[AzBabs]

I didn't get comfortable until I switched to nasal pillows & got the humidification just right. Fought leaks before that.