Husband hates BPAP

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GeorgiaPeach48

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Hello!
This my first post in this forum. My husband was diagnosed with ALS in September of 2020, but his first symptom appeared 6 years ago. His case is atypical in that it's Bulbar Onset, but doesn't seem to be progressing at a rapid pace. Six years ago I noticed that he was using a straw for all his liquids, including his coffee. I asked him about it and he said it was because liquids were running out the sides of his mouth. Today he's experiencing speech and swallowing/choking issues. His muscles have atrophied in his right shoulder and arm. He's lost a good deal of strength in both arms and hands. His lower limbs are NOT weakened at this point. He is having painful muscle spasms in both his legs. At the same time his first symptoms appeared, he was having back issues as well and now has hardware from L5 - S1. The surgeries did not really help with his back pain, and I often wonder if that too was an ALS symptom. I keep forgetting to ask his neurologist. 5 years ago, he was referred to an ALS specialist in Jacksonville who said he did not have ALS because he had great strength in all his limbs and his EMG was inconclusive.

Michael received both BPAP and Cough Assist machines. He tried the BPAP two nights and became very agitated - he feels like he cannot breathe and hasn't tried it again. Reading all of your posts I see that we must get him on these machines to make him comfortable and, hopefully, lengthen his life.

A year ago, he was declining rather rapidly. Thankfully, he's seemed to have hit a period of stability. Is this normal? To have periods of declining and then a leveling out. My husband is 53 and had a TBI when he was 21. I believe, like football players struck with ALS, his head injury has contributed to this unfortunate diagnosis.

Sorry for the long post!
Thanks for listening,
Renee
 

lgelb

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Welcome, Renee, while sorry you have to be here. You are welcome to rant any time.

BiPAP is probably much more important than CoughAssist, so I would focus on that for now. Most often it is set too high at the start, and often not synched to the person's rhythm. I will PM you about tweaking his settings.

Best,
Laurie
 

vltsra

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Renee, when my PALS first started using the Bipap he was very agitated too. The doctor prescribed ativan and we used it the first week. He also did a little cannabis. He got used to it in a week or so when he realized he was finally able to sleep again and became clear headed after being in a muddle. Part of the agitation may have been some CO2 buildup. I think if you can overcome the initial aversion to having his mouth and nose covered he will find it really helps. My PALS has been on Bipap for going on 2 years now.

Laurie is the expert on Bipap settings and I'm sure she'll provide good advice.

V
 

affected

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Huge welcome Renee.
It is true bulbar onset is more likely to be rapid in progression, but not always. The only predictable thing about ALS is how unpredictable it is. So fast, slow, plateaus, and all combinations just seem to happen without rhyme or reason.
I'm so glad Laurie is going to help with the bpap as she is really our expert in that area.
It is not something you just start using and all is roses - it takes adjusting to, both the PALS and the settings.
Try to be patient and I hope you can get that working well over the next few weeks.
Then we can see how else we can help walk along with you.
My husband was bulbar onset, but he was rapid. No TBI, in fact he didn't even know his blood type as he had never even been in a hospital as a patient or had any serious illness ever.
 

DFM20

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Renee,
When my wife first started on her bipap, she felt claustrophobic. We had to find a mask which made her most comfortable. We also had to make sure the machine was already blowing pressure as the mask was being applied. Those things helped her get comfortable with it.
Dave
 

Sonne

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My symptoms started as mostly bulbar almost 9 years ago now and I wasn't diagnosed until 2018- 2019. It's just been in the past 2 years that I'm having more trouble with walking and using my hands. I started on Bipap in 2012 and yes it certainly does take some time to get use to it. Yes it will feel like you can't breath. First if you are a mouth breather the mouth mask is much better than the nose mask and I've found it takes some wiggling around of the mask to fit well. My right cheek is a little fleshier than my left side and I find I have to wiggle the mask around to get it comfortable. If I don't do this then within 1/2 an hour I'm tearting it off and try to sleep without- but of course can't- constantly waking up and getting no sleep at all. I've ended up having some nasal surgery done and it's easier to breath now but I still have to wiggle it a bout. If when putting it on one feels pressure on your nose it isn't on right and it must be moved until there is free movement of air. I also suggest doing this before turning on the machine. This way you can feel your own breath easier and is less anxiety with putting it one. Then when you feel comfortable relax and then turn on the machine. I would also highly recommend using the spray biotiene before putting the mask on. I tend to wake in the morning with a very sore throat even with the moisture of the machine. It does take time and it delegent in a week one should then be good to go but it really does depend on what kind of mask one uses and how one positions it. This is something your doctor should be able to help you with or your bipap service provider. I also have a cd player by my bed and I play a lulabye recording I have. It's been better then any medications I've been on. I turn it on as I get ready for bed and by the time I'm ready to put my mask on I feel quite relaxed. Prior top my nasal surgery I hadn't slept well for nearly a year and it was absolutely awful. Now I love my bipap and can't sleep without it.
Hope some of this helps. Wishing good dreams.
 
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