BIPAP question

[set me free]

Hi all

My mom was als diagnoised in Sep 2010. She is limb onset follow with balbar symptoms,difficult swollowing, choke occasionally, slur speach but so far she is still doing ok. However recently she feels tired and shortness of breath especially when doing things e.g. She has hard time for bowel movement as i think it's because her belly muscle weakening and wasting. so seem she uses lot of energy on her toilet time.

I read from many posts that normally respiratory issue often start when you lay flat on your back for sleeping but my mom do not have that issue. She is ok sleep at night although Her fvc is 34% so we asked her to start using a bipap when she felt tired but seem this doesn't help solve her problem not sure if it's about the setting, we try the resmed vpap wirh S/T model. The doctor set IPAP =10 and EPAP=5 with back up rate at 12 times / minute and ramp = 15. We try to wear her bipap when she felt tires but she felt more suffocated than easier breathing. Would like to hear from you any advice ? Are there any body use this bipap model? Im in Thailand where we have very limited of als specialist who we can consult with. We have 7 days free trial the machine with mom before make decision if we want to buy it.
Thank you.

 

[rcharlton]

It looks like the ipap setting might be too low. I would think 14 to 17 would be more appropriate - but your mom NEEDS to talk to her doctor about undergoing a sleep study - where her oxygen and carbon dioxide levels are continuously monitored - to determine the appropriate settings. That is the only way to know if your settings are correct.

There are real dangers setting the ipap settings too high

Good luck

 

[Al]

I have been using Bipap since Jan 05. My settings are 20 and 10 with 18 resps. My FVC is 44%.

AL.

 

[caldona]

I think AL is right also I have to have my mask in place before turning the machine on.

 

[rcharlton]

My FVC is about 35% upright/29% lying down. My settings are ipap: 17/ epap: 6. My respiration rate is 12.

The respiration rate is a backup rate. Your machine will provide air on demand.

Al is a bear of a man - and that plays into the settings.

FVC is such an imperfect measure of lung function. The tests are very subjective and there is a huge margin of error. People with similar FVC will often have radically different bipap settings - as is evident from a comparison between Al's and my settings.

Bipap settings are not based or dependent on FVC scores. They are based on the pressures needed to maintain O2 and CO2 levels within normal ranges - especially while sleeping. The only way to correctly determine the appropriate settings is to undergo a sleep study.

Now if a sleep study is not an option where you are, you might try adjusting the settings your self - but only as a last resort. Understand that there are real dangers in doing this without being monitored. Make a minor change to one setting and then let your mom test it out for a couple of hours to see if it is better or worse. Step by step.

Sometimes when I feel that I am not getting enough air I will gradually increase my ipap setting and test it out during a nap. But you didn't hear this from me.

 

[set me free]

Thank you very much all for your responds. I will consult this with pulmonary doctor who test her fvc.

 

[set me free]

Thank you i'm thinking as well if it possible error on the fvc test process since my mom seem have no problem breathing both stay up right or lay down sleeping while her fvc test was 34% last month. But doctor didn't mention much or not even suggest a bipap but it's me who discuss with my siblings and we raised this up to her neuro doctor and he just said it's ok if you prefer then we turn to sales person of this Resmed bipap and we went to a pulmonary doctor to set up the machine and brought back home to try. Actually my mum is not convinced for using it. So we still try workinf this out. Thanks again for your time response my question.

 

[st123]

Can I add a question here? Dad had a sleep study last week and the Dr's prescription for bi-pap and oxygen (2 ltr/min for use while sleeping) was faxed to the VA. I received a call from the Respiratory Dept at the VA that it would be '5-6 weeks' for the bi-pap, but oxygen would be added to his c-pap. Sure enough, oxygen was delivered yesterday and set up to run through his c-pap. So I'm new to this and just know enough to know that I don't know anything, but is it safe for an ALS patient to have oxygen in a c-pap - or is that a cause of the CO2 dangers I'm reading about in these posts (because the c-pap only pushes air in and not out)?

 

[caldona]

I am sorry but they told us never to change the setting on my Bipap. They said they would send someone to change it for me.