Brand new here with BIPAP/Chronic Fatigue questions...

Messages
6
Likes
15
So.... Long about late December2020/early January 2021 I started loosing stamina for everyday function. Now in August I've declined to the point that I can't move 20-30 feet without needing to sit down for 5+ minutes to recover and go through it all over again. Chronic Fatigue now controls my life. The V.A. tossed me in the hospital for 7 days after going to E.R. with 203/125 blood pressure. Well into stroke territory. They finally got my BP down a bit and it's still being controlled with meds. It's now in a safe number though they have diagnosed me as having congestive heart failure but said it wasn't the cause of my chronic fatigue.

Chronic Fatigue was my biggest issue and that hasn't changed even after a complete meal of pills that the V.A. have prescribed for me.

As suggested I had a sleep study done by the V.A. and my results were 100+ apnea events per hour. :eek: I guess I'm lucky to still be alive with that number!

The V.A. gave me a BIPAP machine 8/12/21 and I have been sleeping SO much better! Still no improvement in the fatigue department though. I have read that BIPAP can take 60-90 days to affect fatigue symptoms.

Anyone used BIPAP to improve fatigue? If so how long did it take to see marked improvement?

Many, many thanks for any helpful responses.

Joe
 
Messages
6
Likes
15
I've been awakened choking/gasping for breath for 40+ years. Had no idea what could be causing it until recently. I just hope BIPAP is going to "fix" me. If not then I will have to apply to SSDI for disability because I can't lead even a semi-normal "life" and will need a scooter or wheel chair to get around if I get even slightly worse. My "life" really sucks right now...
 

TiredBill

Senior Member
Messages
335
Likes
1,521
@Old Man

Hey Joe, about 5 years ago I was diagnosed with mild sleep apnea. I started with a ResMed APAP device, but by tracking my data I discovered I had a mix of apnea types (regular obstructive apnea and central apnea).

As part of the hoop jumping to get the device I really needed (an expensive ASV machine) I had to trial a BiPap and fail. I did. Spectacularly. BiPaps are great if one only has obstructive apnea. I was the odd case.

I do have a suggestion for you. There is a forum called Apnea Board where advanced users help others get their machine optimized to the best settings by analyzing the data that these machines generate (via a software program called OSKAR).

Very few sleep docs have the time or inclination to dial-in machines for maximum effectiveness, so rather set them to wide open settings and let the machine operate as "fully automatic." Unfortunately that is rarely optimal.

The folks at Apnea Board can help you maximize your therapy if you are willing to upload data and tweak the settings based on the data points . Super knowledgeable people who provide help without cost. Can't recommend the Apnea Board forum more highly.

Bill
 
Last edited:
Messages
6
Likes
15
Wow! Thanks for all the replies folks!

I've been using the BIPAP for only 18 days now. My prescribed settings are 20 inhale/10 exhale. These settings are good for me when going to bed though I'd still like the exhale to be just slightly lower. I've changed humidity to level 7 of 8 and that has eliminated dry mouth. I can't change any prescribed settings. That is done OTA by the V.A. I do wake up with breathing just slightly more difficult. I don't know if the ResMed AirCurve 10 can go any higher but I may request a change in settings. The V.A. is very fast to respond. My large mask fit well but was high enough to cause huge eye bags and distorted vision all day. They overnighted me two new medium masks and I'm good to go now.

I'm quite happy with the BIPAP so far. There may possibly be something better out there but I'm going to give BIPAP a solid trial period as I just LOVE the restful sleep that I can't ever remember experiencing in the previous 40+ years.

As far as oxygen goes when they had me in the hospital back in January my readings were 93%+. And I was a 2 pack a day smoker until I quit cold turkey in early 1999. No signs of COPD (that killed my mother). They were surprised to hear I had once been a heavy smoker.

My main question is still THIS: Is the BIPAP going to help with my CFS and if so how long have experienced users noticed that it takes to see an improvement? CFS is 100% my MAIN concern right now as I'm only one step away from becoming an invalid as far as fatigue is concerned.

Oh, and God Bless the V.A.! Without them I'd be dead by now......

Joe
 

TiredBill

Senior Member
Messages
335
Likes
1,521
Wow! Thanks for all the replies folks!

I've been using the BIPAP for only 18 days now. My prescribed settings are 20 inhale/10 exhale. These settings are good for me when going to bed though I'd still like the exhale to be just slightly lower. I've changed humidity to level 7 of 8 and that has eliminated dry mouth. I can't change any prescribed settings. That is done OTA by the V.A. I do wake up with breathing just slightly more difficult. I don't know if the ResMed AirCurve 10 can go any higher but I may request a change in settings. The V.A. is very fast to respond. My large mask fit well but was high enough to cause huge eye bags and distorted vision all day. They overnighted me two new medium masks and I'm good to go now.

I'm quite happy with the BIPAP so far. There may possibly be something better out there but I'm going to give BIPAP a solid trial period as I just LOVE the restful sleep that I can't ever remember experiencing in the previous 40+ years.

As far as oxygen goes when they had me in the hospital back in January my readings were 93%+. And I was a 2 pack a day smoker until I quit cold turkey in early 1999. No signs of COPD (that killed my mother). They were surprised to hear I had once been a heavy smoker.

My main question is still THIS: Is the BIPAP going to help with my CFS and if so how long have experienced users noticed that it takes to see an improvement? CFS is 100% my MAIN concern right now as I'm only one step away from becoming an invalid as far as fatigue is concerned.

Oh, and God Bless the V.A.! Without them I'd be dead by now......

Joe
My Dad, a Navy/Marine WWII fighter pilot, always received great care from the VA. I'm grateful.

Do they have you on fixed pressure? You actually can change the settings easily, but perhaps you mean they have asked you not to do so and want you to work with a tech? Fair enough.

The advice still stands. You could get input from the folks at Apnea Board and then request the VA make the advised change. The ResMed AirCurve 10 Auto BiPap is the best in its class, no need for anything else assuming you don't have an exotic condition (the way I do). I assume it has "auto" capabilities?

In any case, the better the settings, the better the therapy, and the better the sleep.

If you are going to get improvement in ME/CFS symptoms anything one can do to get more refreshing sleep is a huge plus.

I personally can't say that CPAP "cured" by fatigue issues. It has not. But I am convinced I'm much better off with my machine that without and I never fail to use it.

Having the right settings and a mask that suits you are two critical parts of success.

IMS the ResMed AirCurve 10 will go up to 25, that doesn't mean you should turn up the pressure w/o a good reason to do so.

I urge you to avail yourself of Apnea Board. If you upload your charts people can get a sophisticated look at the data and offer advice for customizing/optimizing the settings. You could then ask the VA techs to make the change if you don't wish to do this yourself.

It is really worth going IMO, especially given the very high rates of apnea you've had in addition to the medical history.

Bill
 
Last edited:

TiredBill

Senior Member
Messages
335
Likes
1,521
Also, if you are going to delve into the data and the settings, make sure there is an SD card in the machine (on the left side, above). ResMed used to always ship with SD card, I understand that it not always the case now.

There is a wealth of data that can be captured on the card on a nightly basis. Aside from no brain-wave monitoring, it is almost like steep study data every single night.

Unfortunately, the data that is transmitted wirelessly is perfunctory--and mainly compliance data.

One can't really do a proper titration remotely. Not the same as having the whole array of data points.

With an SD card (small one is fine), an SD card reader, and the free shareware program OSKAR, you could get insight into exactly what is going on during the night and then adjust to optimize care. Most people never do this, but too many people end up quitting or living with less than optimal settings.

Bill
 
Last edited:

wabi-sabi

Senior Member
Messages
1,032
Likes
2,750
Location
small town midwest
The BiPAP will not cure ME/CFS, but I have to say (and of course may be wrong) your symptoms don't sound like ME/CFS to me. Many doc unfortunately do not understand the difference between ME/CFS and being horribly tired from other causes. ME/CFS is a neuro disease (mostly) like MS, Parkinson's, Alzhiemer's, etc. You sound like you have a heart disease. And CHF can definitely cause extreme fatigue and cognitive problems.
As far as I know, fatigue and breathlessness are the main symptoms of CHF.
Here's a nice link on CHF describing these symptoms:https://www.ucsfhealth.org/conditions/heart-failure/symptoms

I don't mean to sound unkind, and of course, I can't diagnose you. This is just my uninformed gut reaction. If you don't have ME/CFS be happy! CHF is probably a lot more treatable.
 

TiredBill

Senior Member
Messages
335
Likes
1,521
Be very (very) happy if you don't have ME/CFS. This is not a club where you want to be among the membership.

100+ events an hour could definitely cause fatigue. How could it not?

Hopefully CPAP will change your life around.

Bill