Bipap and Cough Assist

[Phil M]

I have issues with my Bipap, and cough assist. When I try to force air into my lungs faster than I can draw it in on my own. My throat slams shut like a bank vault door! There is no way my equipment can force air through. I have tried everything. Right now I have a sinus infection, and it sure would be nice to clear my lungs. When I mention this problem to my Doctors. They get a confused look on their face. It is very obvious that they have no clue what I am describing. In fact, I don't think they believe me. The only thing I think will fix it is a tracheotomy, and thats something I was not planning on doing. I feel pretty strong about not doing it. Right now my FVC is 70%. I'm about to the point of saying screw it. I had a good life, and if its my time, its just my time. I will have the satisfaction of knowing this dam disease goes with me! I'm not usually one to complain, but dam this!

 

[Kirk]

Re: Am I freak of nature?

man...so sorry you are struggling with this Phil. I don't have much to offer you but support as I'm not on Bipap yet. Regarding doc's...my advice is to push push push unyil get someone that will help you. You are in control of your health...doc's are just people too...I took doctors off the ol' pedestal a long time ago. My prayers are with you Phil...keep us updated.

 

[brooksea]

Re: Am I freak of nature?

Sigh...sorry for your troubles Phil. My husband has problems with both and we have to change settings. He's at the same FVC you are. BiPap settings are changed thru rx from Emory and cough assist we wing by research.

If you take the dam disease with you, on the way, could you throw it in a black hole?

 

[TedH5]

Re: Am I freak of nature?

Phil, I wish I knew what to say. I am sorry your are struggling with your Bi PaP. Did you have the same issues with your BiPaP prior to your sinus infection? Please stay strong and keep the faith. You will be in my prayers. Please know we are here for you and yes as CJ stated lets all throw this disease in a deep dark abyss!

 

[Phil M]

Re: Am I freak of nature?

Phil, I wish I knew what to say. I am sorry your are struggling with your Bi PaP. Did you have the same issues with your BiPaP prior to your sinus infection?

Oh yes. I used it some when I first got it, but my FVC was in the upper 90s then. I started antibiotics yesterday, so I am draining some now. When I cough enough to deflate my lungs. Its like getting the wind knocked out. I have to sit calm for a bit before I can inhale. I know there is a lot of people here that are far more progressed than me, so I'm sorry if I sound like a whinner. I'm really not much of a whinner, just frustrated. I need to go see a ENT Doctor, but I know what he will want to do. Its just me, my folks who are in their 70s, and my sis. I can't put a plug pulling guilt on them. And I think being caregivers will be way to hard for them.
This can be such a complicated disease!

 

[avokaty]

Re: Am I freak of nature?

Hello Phil M ... You're definitely NOT a freak of nature. My mother has had problems with the cough assist and the Bipap. I am a new member and would like to ask everyone on these ALS forums ... is my mother one of the oldest to be diagnosed with ALS? She was 82 and diagnosed last month ... what a shock.

 

[abbas child]

Re: Am I freak of nature?

Phil, I don't have any experience with the BiPap, so I'm asking out of ignorance, but could the RT help you with it if the RT is an ALS savvy person? I do understand your problems with a trach. I pray right now that you will breathe, and the infection will heal quickly...It's so hard to be suffering and not understood, and nowhere to turn. So, I'm praying for tonight, that you'll be given a turn around and with it, peace instead of frustration.

 

[Rose554]

Re: Am I freak of nature?

Hello Phil M ... You're definitely NOT a freak of nature. My mother has had problems with the cough assist and the Bipap. I am a new member and would like to ask everyone on these ALS forums ... is my mother one of the oldest to be diagnosed with ALS? She was 82 and diagnosed last month ... what a shock.

Your Mom has my Mom beat by a few years. Mom was diagnosed Sept 09 3 months before her 78th birthday. We were shocked for her to be diagnosed at this age. She has declined greatly in the last year...having difficulty with her Bipap but seems to have accepted the cough assist. For now she is only using the bipap in the afternoon for her naps. Causes to much anxiety for her in the evenings.

 

[Phil M]

Re: Am I freak of nature?

I know how to change my bipap settings, and have a pretty good understanding of it. But like I said. If it moves more air, or pushes more than I can draw in on my own. The door slams shut. I'm pretty certain it is suposed to push some, or its no better than my FVC. Does that make since?

 

[joelc]

Re: Am I freak of nature?

I wish I could change your mind concerning a trache but since you live in the US it might not make a difference. The reason I say that is because I don't know anyone your side of the border who is allow to change settings. I turn my volume up and this dislodges secretions deep in my lungs so they can be easily suctioned out. Then we turn the volume back down. This is also why no one in my province gets pneumonia with a trache and vent.

Having said that, I don't see why you could not have a trache strictly for suctioning purposes.

 

[lms9258]

Re: Am I freak of nature?

Hi Phil, my mom has a little trouble with the cough assist, the Bipap has been nearly impossible. We have tried to use it over and over, for approx. one year now. I've had the RT come out on numerous occasions, with different masks, and to see if we're doing it correctly (troubleshooting). My mom can't talk, and she has FTD. So It's been question and answer sessions with a dry erase board, with me trying to figure out just what exactly the problem is.
She has not had an effective FVC in about 7 mos. because the dementia makes her laugh her head off the whole time, so she can't close her mouth around the thing she's supposed to blow into (the last "accurate" reading was 60). The doctors and RT's always ask why she isn't using it, and then give us a lecture on the importance and reasons for it's use. We then try, try again. Maybe this is what happens to my mom, and she just doesn't know how to explain it. Sometimes she writes that "air is blowing in her face". Could that be similar to what you've described? I could sure use some advice on Bipap issues. I know what it's purpose is, and would love to successfully use the thing to give my mom a little better quality of life.

Then again, if the Pro's haven't been able to figure it out, and my mom can't clearly explain the problem--maybe it's time to stop beating my head against the wall trying to figure it out.

As with Rose554's mom, my mom also experiences more anxiety with it in the evenings.

Could you throw FTD into that same black hole CJ described? Thanks

Laura

 

[Phil M]

Re: Am I freak of nature?

Joel, I don't know how common it is, but I asked my neurologist about changing the settings myself since als is a progressing disease, and he agreed with me. He told me to start on a low setting. Then as I progressed. I can step it up as needed. Well when the med supply lady delivered it I told her that my Dr wanted me to know how to adjust it, and she showed me. So its a possibility that pals can say the same thing I did, and they might show them too. I didn't want to keep driving to Atlanta every time it needed changing. I'm finally feeling a better now, but I had a terrible night! I woke up with a raging headache! I'm sure my blood oxygen got low since my breathing was so shallow. So Joel, your saying that in Ca, they show you how to change your Bipap?

 

[BarryG]

Re: Am I freak of nature?

Hi Phil, when I asked my RT she told me that there was no way that she was going to show me how to change my Bipap settings. So no, just because you are in Canada it doesn't mean that they show you, it depends on who you are dealing with.

My experience with Bipap has been generally good, I put it on and it starts blowing. I think it is important that it doesn't blow too hard and I think my settings are such that the pressure is just slightly higher than my normal inhalation. I download to the the smart card every few months and mail it to my clinic (a three hour drive one way) and the RT makes any adjustments that she thinks are necessary and send the card back to me. My Bipap is a a loaner from the clinic so maybe that has something to do with it but I think it is more that the RT don't believe that we know anything.

I don't have a cough assist machine yet so can't comment on that but as far a trache goes I am thinking more about it more for my ongoing throat clearing problems than for breathing assistance. In other words my lungs and diaphragm still work fairly well but, like my peg, the trache would be a detour around the roadblock that my throat is becoming.

Good luck and I hope you get something figured out.

 

[TedH5]

Re: Am I freak of nature?

Phil while I do not have any answers for you keep in mind that your breathing issues are not limited to FVC and blood oxygen levels. As a matter of fact I imagine the reason you qualify for a BiPap with a FVC of 90 is due to your MIP or MEP score. That is how I qualified for mine. It is not all about your lung capacity. From what I have learned your inhale and exhale pressure are equally important. When your exhale pressure gets low your body is not releasing the CO2 properly. All the DR's and nurses will tell you that it takes time to get adapt to BiPaP use. You should try and set milestones. 5 minutes at a time, then 10, then 15 etc. Joel talks about in his blog that the BiPap frustrated him at first and took him a few weeks to be able to use it. Also does your Bipap have a ramp up option?
Do not quit trying, you can do it! Stay strong and keep the faith! - Ted

 

[Phil M]

Re: Am I freak of nature?

Ted, I just use fvc as a reference really. I did not qualify for a bipap by breathing standards. I had a sleep study done right after my DX, and found out I have sleep apnea. I did a little magic, and got a bipap for that knowing I would end up getting a bipap anyway. A cpap would have been temperary.