I’m having a hate–hate relationship with my Trilogy, which is the BiPAP machine I use to breathe at night. Except, do I actually use it to breathe at night? The fact that I’m unclear about this is the biggest part of the problem.
Back in June, I was in the ER and then the ICU for a case of pneumonia. I had already been told that my breathing levels were on the decline, and the illness didn’t help. I left the hospital with both a cough assist and the Trilogy, and I was told to use the latter every night.
Friends with ALS told me to try the nasal pillow mask, because it was the smallest and most manageable. Little plastic “pillows” fit into your nose and a single strap wraps around your head. Air blows directly into your nostrils all night. But it didn’t work for me, at least not at first, because my mouth kept popping open, shifting the air around and waking me up. So I opted for a full face mask, not unlike an imprisoned serial killer who eats his victims. That’s right, I said his. It was not a good look for me.
The problem with the full face mask, I soon found, was that it needed to be so tight that it made marks on my skin, eventually resulting in a large cut down the front of my nose that is still in the process of healing.
Every morning for the past two weeks, Scarlett has peered closely at me and said, “Your face looks horrible.”
“Thanks,” I tell her. “I appreciate your honesty.”
“Your teeth are yellow,” she replies.
I’m pretty sure my teeth are not yellow, but she’s right about my face. I switched from the full face mask to a half-mask which covered only my mouth, and instead of having cuts all over my nose, I now have them on my chin and cheeks. Loosen the mask, smart people will say, but if it’s too loose, air leaks out and blows on my face and I don’t get any sleep—or any air, for that matter.
I explained all of this to the respiratory therapist who stays on top of my case and comes over pretty much whenever I need. We decided to try the nasal pillows once again, since they take up the least amount of space on my face. But I can really only wear them for a couple of hours each night until the pressure becomes just too intense. Air blowing directly into your nose is hard to sleep through.
The respiratory therapist also told me that my settings are as low as they can be and I’m not actually using the machine to breathe. In fact, she says, it’s just there for emergencies. At my ALS clinic, they have a different take. They say that using the BiPAP allows my diaphragm muscles to rest at night so that they can be stronger, longer.
So…if I’m not actually using it and I can breathe on my own, what is the point of having this thing on my face? I spent the last two nights without it, and I feel fine. But what if I’m neutralizing or diminishing any future benefits the mask may be providing?
Confusing.
I realize that by asking these questions in a public space, I’m opening myself up to people’s opinions. That’s fine, although I’m not really looking for advice. I’m just telling another part of my ALS story. The uncertainty, even from the experts, that comes from having a disease that is so varied from patient to patient. The breathing scores that send you into a panic, even though they might not mean anything. There are so many variables with ALS, and so many things that patients and their families need to figure out on their own. It’s stressful, and exhausting. But that is the nature of this disease.
My plan is to get it figured out, and move on to the next thing. Which is maybe a trip to the dentist and some teeth whitening strips.
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All these issues with Mama and Her trilogy. blah. I’m sorry. finally settled on the nasal pillows and I cut sponge hair
rollers, longways, and slipped them around the straps. makes a good cushion for the straps. it helps, straps were marking up Her face pretty badly before. The padding that comes on the straps is , well, not very effective. Good luck, I hope You find a solution that works for you.
That’s a good idea. Thanks, Deborah.
Hi, I luv reading your blog. I have a hate hate relationship with my trilogy too, my mask leaks every time I move, I tighten it, and I’m pretty sure my nose will eventually fall off. My machine also fills my stomach up with air, talk about noisy haha. Hugs and prayers to you
I only use what I want to use. If I didn’t I would be using everything. They said I could have a cough assist and a bi-pap and a feeding tube. They were like a used car salesman, the more things they give you the more money they get. I said no to all of them and I have had ALS for 16 years and I think I am better off without them. I would think about what you need, what you really need, not what they say you need. You are right, every ALS person is different.
Sarah,
I feel your frustration! I have heard some of the same things… You need it, so that your diaphragm can rest etc, and also like you, told that I’m not really using it, but that it’s only supplementing me if I were to begin to breathe more shallowly… I use the nasal pillows, as the mask made me feel claustrophobic, as for opening your mouth, have you thought of using a chin strap? One was suggested to me, but I haven’t tried yet.
I hate this for all of us!
Thank you for always keeping it real, and letting us know that we aren’t the only ones with these frustrations!
Respironics Premium Chin Strap https://www.amazon.com/dp/B008MJW18K/ref=cm_sw_r_awd_l9UIwbZCASM0R
My breathing is at 50% plus or minus a little for the last year or so. When I got my bipap avaps 2 years ago I used a full face mask and I got along real good with it all night long for about a month. Then it started leaking some and went through getting a new cushion for the mask. That worked for a little bit but soon wasn’t comfortable with the mask. I got a new mask that went over my nose which was real comfortable but at night had the same problem as you with air leaking from my mouth and I didn’t want to use the chin strap. I finally gave up on using the avaps at night. I sleep so much better without it. Like one of the people that commented on this post, you need to pick and choose what you want to do. Take all the recommendations into consideration. Try it, but if it isn’t working or you don’t like it, you are the BOSS! I think with this disease, you will live longer and better if your happy. Don’t let anyone push you around. The clinic and doctors are there to help you not boss you around.
Make your day a good one! Brian Epp
That does not sound fun or funny, but I am laughing at the yellow teeth comment from Scout. Holton tells me my teeth are yellow and they are not! Thinking of you. Miss you!
Hi Sarah,
I know you said you weren’t looking for advice, but I’m a man (can’t stop myself). I have been on a CPAP for over 10 years so I have some experience with the machine you describe. When I first started I also had issues with the head gear. Here’s what helped….a small fan next to the bed moving air across my face. Sounds silly, but as I dropped off to sleep, I would imagine being in a boat moving across the water with the breeze on my face. It worked wonders. Also, I ended up cutting all the useless straps off the head gear until I was down to just one around the back of my head. I have found it does “not” need to be as tight as they put it on in the hospital to be effective. Good Luck, Love ya…. Jim H
Thanks, Jim! xo
Thanks, Brian!
Thanks, Rich!
This is good to hear. Thanks, Sharon.
Thanks, Angela!
Ha! Brats. xo
you might ask your ALS clinic RT if mouth piece ventilation would be an option for you. iT would rest your diaphragm during the day (still getting. The hours diaphragm rest in) free your nose from breakdown and also allow for breath stacking maneuvers which would help open the alveoli and help getting secretions up from your lungs. The decision if that would be feasible only during day might depend on vital capacity lying down versus upright. Also there is a non invasive chest cuirass called the Hayek that might be an option. Just some thoughts you might run by your ALS clinic team.