diaphragm weakness - non-invasive ventilator

[njbreathles]

I kind of need a person to relate to...
I am using a noninvasive ventilator, not all night yet, learning to sleep with it, besides diaphragm fatigues after around an hour on the machine.
( better than the half hour a week ago)
My sleep is disturbed and i can't sleep for more than 2 or sometimes 3hr stretches, but i wake up with a fuzzy bad headache, i am getting rid of one right now,the ventilator is so much better than the bipap machine.

anyone got any advice or is anyone going through this too

i am an early bird, 4 am i am sick of sleeping, and the further away i get from sleep the better i feel.

and even tough i is winter , i need to get that fresh air, i love open windows and wind


peace nj breathless

 

[trfogey]

Re: diaphragm weakness

Try using your ventilator in the daytime to help yourself acclimate to it. Slip a movie into the VCR/DVD player and watch the whole thing while the ventilator takes over some of the breathing load. QED.

Ask your doctors about the sore diaphragm and the headaches. Usually, headaches are a warning sign of CO2 buildup and should be addressed by the doctor responsible for managing the ventilator.

Good luck to you.

 

[njbreathles]

Re: diaphragm weakness

I do for 1 hour on and 1/2 hour off when i am able too, i am strating to fell good enough to go for short walks and a short time away from the vent.do th blod pressure meds that were prescribed to me by general practioner, my diaph. already wweakened by pneumonia went to sleep for 8 hellish days and all i had was a bipap and when i got to see breathing dr he was a week getting me my machine , and it was that week.
last saturday after short nap, i woke to no pressure in diaph. i was whoa what's up, and then i lifted my shirt and ther it was moving, oj my husband and i rejoiced , that medicine wore off, then i got the machine tueday, and used it like crazy and then when ni woke up at 1am all muscles were so sore, that's when i realized be kind to them i massage them with aspercreme, and use lidocaine pain patches .
and my diaph is slowly getting stronger, but my body sitll wakes me up a few times in the night, it's rescuing me from too much co2 , i know and so i am trying to go thru this thankfully and patiently thank you for responding TR, peace nj

 

[njbreathles]

Re: diaphragm weakness

sorry about spelling vent nose gets in way

 

[Okie2]

Re: diaphragm weakness

For sure ask Respritory Dr to adjust settings, maybe not enough pressure to clear co2. I hope it does get easier for you to use the vent it certainly helps me have a little more energy. I must recharge myself in the afternoon or I get headaches, but no headaches while sleeping with it. Good luck!

 

[njbreathles]

Re: diaphragm weakness

Hey okie . thank you, i will, i doincrease volume and breaths during the day ,also diaphr. pretty freaking weak and this the worst it's ever been so the whole vent and
sleeplessness is new to me

my hot shot dr explained it like this to me:

When you are sleeping, your body does not require the same amount of oxygen. As a result, the breathing cycle changes, breathing becomes slower and shallower. This is fine if you have normal lung function.( I have) However, if you have any respiratory muscle weakness breathing can become even more shallow. This may lead to frequent awakenings during the night. Your brain will tell your body to wake up and take a breath! You may or may not be aware of this phenomenon. (I am)
When you are lying down the strength of your diaphragm to push stomach contents away from your lungs is very important.( my stomach muscles are problematic) If this muscle is weak, you may notice that lying down is no longer comfortable and you may feel restless or short of breath. I have been propped up with pillows when in bed for more than month now 1st pneumonia, then the muscle weakness deal.


His eye is on the sparrow........

 

[Danijela]

Re: diaphragm weakness

I thought non invasive ventilator and bipap were the same thing. Also, in ALS muscles can not get stronger, just weaker (at one point you mention diaphragm getting stronger). Finally, if you feel sore it may be that the settings are too high. They need to be adjusted and CO2 tested until in normal range on particular settings. All the best.

 

[njbreathles]

Re: diaphragm weakness

I have no diagnosis except ventilatory insufficiency due to proximal myopathy, from breathing muscle specialist, who referred me to neuro muscle expert, lost insurance went to muscular dystrophy doctor who pushed on my limbs, told me to keep using cane after watching me walk. and then said we will emg you after summer, i had a good summer ,went back he put the emg needles in my right calf muscle, and then said i don't have md.see you in 6 months

i see this dude this month for follow up , i'm gonna grab him by his collar ( not really)and say figure me out, besides insurance is 2 weeks away and his appointment with me is 3 weeks away.Insurance talks and is more influential than self pay baby, thanks Danjiela, nj

 

[njbreathles]

Re: diaphragm weakness

just one more thing good morning, the bipap machine settings i hadwhen this problem kicked up a notch was like
a vw bug 4 on the floor, not getting out of it's own way,

the non invasive ventilator is like a maserati with 5 on the floor,
and you can vary the settings with parameters from your dr.
and it's smoother and works even all the way down to my belly muscles

I named it lovingly c3p0, and i love it so, at time s i hate it, but mostly it's love...........

 

[Susan10]

Re: diaphragm weakness

njbreathless, like you, I had no insurance at the time of diagnosis. After paying cash for 4 dr visits, 3 MRIs and an EMG last summer, I was thrilled to find out that MDA has a grant that will pay the Dr for your visits. The only cost I've had since diagnosis is a manual wheelchair. Medicare Advantage kicks in on May 1.

 

[njbreathles]

Re: diaphragm weakness

thanks susan i will look into that, i am under md umbrella, but never have asked for help, will see md person when i see dr in 2 weeks . i'll ask about help then, thanks nj