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bigmark1954

Very helpful member
Joined
Jan 31, 2014
Messages
1,035
Reason
PALS
Diagnosis
01/2014
Country
US
State
UT
City
taylorsville
My 02 level has been tanking over the last few months. I thought the reason I was so foggy and lethargic was cuz of my meds.

About two weeks ago I had a light go of in my head and decided to break out the oximeter. Much to my chagrin it displayed 80, I almost sh!t my nickers. I had been able to maintain 88-90 during the day previously, and am on BiPap with 2 units of 02 to keep above 90.

I have an appt with the Pulmonologist Friday morning and will see how she wants to handle it. I HAVE READ THE FREAKING STICKIES, but am curious if any of you are on 02 during the day??

I have read the arguments that being on 02 is bad for PALS cuz it makes it easier to breath and could weaken the ability of the diaphragm. It is like I forget to breathe sometimes and can elevate my 02 saturation by breathing rapidly, or taking deep breaths.

This really sucks for me and the fatigue, fog, and headaches are brutal. I am still trying to do yard work, chores and honey dos, but it is getting to where I need to cut back. I can't even exercise, which is essential to my mental well being. I HATE THIS!!!!!!!!!!!!!!!!!
 
Hi, Mark,

So you do not use BiPAP during the day? If you did, with a backup rate and target volume, you would not have to remind yourself to breathe/how deeply. It would be much more appropriate to use BiPAP during the day, and you could still do chores, etc. with it, than to use O2 alone.

Best,
Laurie
 
Hi, Mark,

So you do not use BiPAP during the day? If you did, with a backup rate and target volume, you would not have to remind yourself to breathe/how deeply. It would be much more appropriate to use BiPAP during the day, and you could still do chores, etc. with it, than to use O2 alone.

Best,
Laurie

Thanks, but how would I mow the lawn, or sweep, or change the oil in my truck on BiPAP?
 
Put it on a pallet or cart when you're changing the oil. Use a portable CPAP with expiration relief (on a lanyard around your neck) when mowing the lawn or sweeping.

Granted, you would have to buy the portable CPAP (Z1).

Again, hoses go up to 10' and can be daisy-chained with a connector.
 
Your fogginess and lethargy may also be due to high serum CO2, which is of concern because long duration can cause your body chemistry (pH) to change, which ain't good!

A simple serum CO2 test will do.
 
Mark I would say that while you can easily test your O2 level and you can see it is low, the problems you are reporting in symptoms are the corresponding high levels of CO2 and this is the PALS issue. Being foggy, fatigued and headachy are not symptoms of low O2 but of high CO2.

This is why the bipap is the key rather than giving O2 as you would see that level rise again, but the CO2 would not necessarily lower but may rise even more.

Thinking about portable machines and long hoses may well be a far more viable option than you are thinking.
 
Pay some kid to mow the lawn and go to local mahcanic to change oil,sit back and enjoy the view.
Just saying, co2 sucks, I got the same problem trilogy helps me.
Chally
 
I've been dealing with O2 saturation for a few months. It's consistently below 90 for more than 6 out 8 hours when I sleep. My trilogy has been adjusted 3 times with no change. My Doctor put me on 1 lt. oxygen at night. And I'm due for another overnight test.
 
I would be happy to help you reconsider your Trilogy settings, Patrick. Most PALS do not need O2 and as Tillie points out it can worsen CO2 buildup.
 
I would be happy to help you reconsider your Trilogy settings, Patrick. Most PALS do not need O2 and as Tillie points out it can worsen CO2 buildup.

How does adding 02 increase co2? It doesn't seem logical that elevating to a normal 02 would create more c02?
 
In ALS the primary issue is not being able to push out breaths leading to retained CO2. Supplementing oxygen if the issue is what I described can trick the body into thinking you don't need to breathe as often leading to more CO2 accumulation, or that you do not need to breathe at all leading to.....

Sometimes with bipap a little O2 is used cautiously in particular cases but without bipap addressing what is probably the real issue it can be dangerous. Your pulmonologist should test your levels and then you will know better what is going on. The oximeter is only showing a tiny bit of the story
 
Second what Nikki said. Normally low oxygen levels in the blood stimulate respiratory drive (think about what happens at high altitude) and this helps blow off excess CO2. In ALS and in some people with COPD (chronic lung disease from smoking) who tend to retain CO2 due to hypoventilation, increasing supplemental oxygen can actually suppress the respiratory drive, leading to more CO2 retention and acidosis (increased acidity) of the blood. Supplemental oxygen should be administered cautiously in these circumstances only if blood oxygen levels are very low.
 
Hey Mark I hope those few answers made sense to you - we breathe O2 in and breathe CO2 out. Supplying O2 means you breathe with less force and so may retain even more CO2.

The other thing I mentioned is that the symptoms you describe are NOT symptoms of low O2 but symptoms of high CO2. For that reason alone delivering O2 is not an appropriate response, even though your O2 is low.

Bipap will raise your O2 AND lower your CO2 and so address both issues, rather than address one and worsen the other.
 
THANKS TO ALL for the comments, I now have a better understanding of this issue. I will post a follow up after the PULMO works me over.:grin:
 
Hey Mark, just wanted to add my two cents. I am with you on all you have said about using the BiPap 24/7. The damn machine (we call mine Adolph) leaves NO room to do anything that remotely resembles quality of life. At the same time I know I need it to clear the CO2 so I use it when I am not doing something else. I can barely walk, talk or type or do much of anything. But I still try and help cook, clean myself, have talks with my wife etc.. I fight not using Adolph till after lunch then have it on the rest of the day and night. I have kind of stopped looking at this as living but more as surviving...
 
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