Could IPPB make speech worse and waking up with blood on pillow

[elpwilke]

My mother, 72 yrs old has Bulbar ALS. Her speech is getting worse (in addition to arm and leg muscle loss) and her diaphragm capacity is at 35%, pulmonologist suggested an IPPB since she refuses to discuss a BIPAP. She has only tried the IPPB for 3 days now, but believes that the machine is drying out her mouth and throat and making her speech worse. Does anyone have knowledge of IPPB and if it might be bad for Bulbar ALS? She has tried a face mask and a mouthpiece with a nose clip. She has a difficult time "learning" how to let the machine breath with her. I don't want her to give up the IPPB unless others have experienced speech getting worse. Has the IPPB helped others gain energy during the day? Advice on using the machine? We have it set low, around 15 right now, there is saline misting.

Also, recently she has woken up and found blood on her pillow. We are not sure what is causing that. She has a difficult time brushing her teeth and uses Biotene for her salvia problem. Could she be biting the inside of her checks or tongue? She didn't feel any sores inside her mouth but I haven't looked inside either. She is still eating normally and keeping up her weight with nutritional drinks, protein powder on oatmeal and lots of sweets (I think the Paroxetine for anxiety caused the sweet tooth but that is okay). Any advice regarding mouth issues that could cause night time bleeding? thank you

PS: I have been reading the forum since November and learned a lot, most important, let my mother guide me on her path and find joy each day.

 

[brooksea]

Are you are referring to the use of the "cough assist." She does need to use it, especially to rid secretions from her lungs. As far as I know, it does not cause any worsening of bulbar symptoms. (My husband never indicated that and I never observed any deterioration in that area after use.)

She really needs to use the BiPap! It may be difficult to convince her, though. There are a lot of different masks to choose from. She might want to try using the BiPap during the day while watching TV to get used to it. She might prefer one mask for day and another for night.

As for the blood, it is entirely possible she is biting her cheeks. I would investigate further, though. Every symptom may not be the result of ALS and might be treatable.

 

[brooksea]

I'm sorry. I replied to your post, but it went to moderation. Hopefully it will show up soon.

 

[BrianD]

I see practically no difference between IPPB (Intermittent Positive Pressure Breathing) and BiPAP (Bilevel Positive Airway Pressure) but that is based on comparing my actual Bipap use to what I've just learned about IPPB from the int er net. Can you explain the difference? I think regardless of which method, it will take some time to get used to it. Unfortunately, some people have said their mouth gets dried out no matter how high they set the humidity setting... but others say they do fine. Have you tried the opposite where you use a chin strap or ace bandage or something to try and keep her mouth closed with the face mask to have her use her nose instead? That may or may not be an option depending on how the bulbar symptoms are.

I can say once I got used to it, I have much better sleep using Bipap. It took a while. I also had to start with a much lower pressure setting than what the doctor wanted... but for me made it tolerable to get used to.

Good luck!

 

[elpwilke]

The IPPB is not a cough assist machine, apparently that is something different that no doctor has suggested yet. The Pulmonogist recommended the daytime IPPB for my mother since she said no to BIPAP. I will ask the DME when he visits on Tuesday how different a BIPAP looks/works and maybe my mom can use that during the day only, she is convinced she cannot use BIPAP at night. The IBBP is the size of 2 shoe boxes and it uses saline in a nebulizer and blows room air into her lungs. She is supposed to use it twice a day for 10 minutes to increase her diaphragm. Appears as if the IPPB is not used often by ALS and BIPAP is the preferred machine even for daytime use. I will reduce the pressure when she uses it today.

thank you for your comments and questions so I can research with the DME. I have learned that my mother wants to live (good) but she also doesn't want to learn about ALS and options to help her which is hard. Her progression has been quick.