Bipap Gremlins

[rcharlton]

OK

So my FVC is 30-35%. My pressures are 15:5. I'm on my bipap 6-7 hours at night and 2-3 hours during the day. I can get by without it but I actually enjoy using it.

The majority of the time my bipap experience is amazing - almost like a drug. My lungs being filled up with air - oooh baby!

But every now and then I have problems. Sometimes it's a struggle breathing with the bipap on. Not quite gasping for air but it's a lot of work. It can persist for hours and it is impossible to sleep. It is a relief when I take the mask off and I can actually breathe easier. Weird thing is that the next time I use it everything is fine.

I've tried to identify any possible causes.

I check my hose - clear.

Minimal or no mass leakage.

Filter- clear.

Of course I can never replicate the conditions at my clinic visits.

I'm wondering if there is phlegm or mucous obstructing my breathing - but it's not too noticeable.

Anyone else experience this?

 

[trfogey]

What style of mask are you using.

 

[VoiceforLinda]

Yes, I am having the same problem. I don't know what the problem is. I am on my third mask. Sometimes I rip it off just so I can breathe. Scares me for the time when I am unable to take it off by myself. I am afraid I will suffocate.
Linda

 

[Miss]

I asked my husband if this happens to him, and he said no. He uses the nasal pillows. Possibly, he is breathing through his mouth if and when this happens, so he doesn't wake up.

 

[Al]

I get it a few times a week when I first put it on. Anxiety I think. If I take another Ativan and sit on the side of the bed for an hour I'm ok. Some nights I think it's gas pushing on the diaphram making me SOB. Tums help.

AL.

 

[rcharlton]

Allen - I have a Resmed Ultra Mirage full face mask. Vented

It may be anxiety- although I never feel that anxious.

It feels like either my throat or the hose is constricted.

Maybe I'm congested at times.

I don't know

 

[trfogey]

Richard,

Can you describe the difficulties you're having in a little more detail? Mainly, are you normally getting good airflow both on inhale and exhale and this just pops up out of the blue and stays a while? Have you noticed any change in your ability to cough, either on or off the mask?

The reason that I ask is that I had something similar happen to me about a year ago. Turned out that my exhaling muscles had taken a sudden turn for the worse and I couldn't breathe out enough against the EPAP pressure any more. I wasn't moving enough CO2 out so that I could get a big breath of air in. The CO2 started to build up and that would give me that air hunger feeling. That would get the adrenaline pumping enough to force the lungs to empty until the panic wore off, then the cycle would repeat. Very, very scary.

I finally had to give up my full-face mask and switch to a nasal mask. That way, I could breathe out through my mouth with no pressure to overcome, while the EPAP keeps the nasal area open for the inhale. You have to get used to breathing that way -- in through the nose and out through the mouth -- but it has worked very well for me.

 

[Miss]

Trfogey, that's exactly what my husband says.

 

[rcharlton]

Thanks for your replies.

Allen - your description matches exactly my experience.

Would adjusting the bipap pressures help at all?

Thanks

 

[trfogey]

Thanks for your replies.

Allen - your description matches exactly my experience.

Would adjusting the bipap pressures help at all?

Thanks

My current pressures are 18 and 5, and I had to fight with the RT folks to get the EPAP down to 5 (was 6). I think that some of the weird settings we PALS need get out of the RT comfort zone (from their training) that they start creeping the EPAPs up as the IPAPs get high.

Of course, most of their BiPAP "rules of thumb" are based on sleep apnea and COPD patients who have mechanical obstructions and not muscle weakness. Even the average pulmonologist doesn't get it, so even more reason to get your care from an ALS clinic, rather than a local neuro/pulmo combination. The best thing, though is a really experienced RT with a "titrate to patient comfort" order. Then you can work out the changes you need quickly.

The BiPAP I have won't go lower than 4, so a nasal mask really was my only option. I use the same mask the guy in the video I linked below used -- the Resmed Mirage Swift II.

YouTube - ‪Tony Judt on having Motor Neuron Disease‬‏

 

[rcharlton]

HALLELUJAH! I HAVE BEEN SHOWN THE LIGHT!

Allen you are a saviour. You have helped me solve a problem that has plagued me for a year.

I just assumed that all breathing problems were the result of lack of air. It never occurred to me that the problem could be inability to get rid of air - more specifically CO2.

I just had a nap and got that air hunger feeling. I made a conscious effort to expel as much of the air in my lungs and then take a deep glorious breath of fresh air - and the air hunger feeling quickly subsided. It took a bit of effort but such a relief.

Obviously some adjustments need to be made somewhere - but at least I can finally explain what the problem is.

I do have a nasal pillows mask but I am a mouth breather with sinus issues so I need a full face mask. But thanks for the recommendation.

 

[trfogey]

Glad I could be helpful, Richard. I'm just paying forward what folks like joelc did for me over at PLM in my early days with BiPAP.

Just curious -- have you ever tried a chinstrap with your nasal mask tho keep your jaws together while you nap. If not, borrow one of your wife's old scarves and give it a shot. You may wake yourself up snoring until your tongue trains itself to seal on inhale, but that's what I use when I sleep. Providing of course, that your sinus problems don't prevent you from moving enough air through your nose without having your mouth to help.

BTW, if I remember correctly, Joel told me that his last BiPAP settings before he vented were 18 and 3, maybe 20 and 3. He was also the one that told me to get the "titrate to patient comfort" order. My neuro wasn't too keen on writing that kind of order, but my old primary care guy and now the hospice doctor had no problem doing it. No sense losing sleep while the bureaucracy grinds.

 

[Sequoia]

How do you get your reading for CO2? My O2 is 95% which i think is pretty good. I would like to get a reading for co2, as my last breath test was low. But I do not feel any panic about breathing, sitting or lying down?