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Experiences with sleep apnea treatment amd ME/CFS

TiredBill

Senior Member
Messages
335
Hi, @Bill. I've had such a hard time getting used to the machine that my doctor allowed me to try it out for awhile capped at 4. One reason I've never been able to sleep with the PAP is that if I do start to fall asleep, there's a big rush of air that wakes me up. My apnea is mild, and the pressure was originally set to 4 with a maximum of 10.

At the clinic, they had told me to try it during the day to help get desensitized to the mask and machine. Once I feel better on it during the day, I'll try it at night, at which point they will raise the pressure.

I'm using nasal pillows, and even at the low pressure of 4, it sure feels like a lot of air through my nose. Even with the humidity set to 6, at the end of the hour my nose was very dry.

Luckily, the clinic is open today, so I have someone good helping me with all this. One worrying thing is that she ran a detailed report on my 58-minute-session the other day, and the 5.2 events were all central apneas. The technician is sending that info to the doctor. She said she doesn't know why centrals would show up if I were awake the whole time.

Oh, well, this is good information to have. I know you feel better after having your central apneas addressed, so I assume I can get better, too, if I get the right equipment and these problems addressed. I have been so spacey lately and feeling something is really wrong.

I went to sign up with the Apnea Board so I can participate in the forums, but Firefox warned me that the logon is insecure there. I will look around for another PAP site. I really think that internet privacy is a lost cause now, but I do pay attention to warnings.

I really urge you to join Apnea Board and to post Sleepyhead data there. You will get the best possible input.

They are not running the newer "https" protocol, which is why you are getting the security alert, but the site is fully secure. The other main board (CPAP Talk) is not a friendy or supportive place. Not a place I'd send a person with ME/CFS, a woman, or anyone who was expecting kind responses.

In contrast, Apnea Board is outstanding and supportive. I strongly urge you to join there. I've gotten much better advice there than I've ever received for sleep doctors and technicians. Especially when one has issues it is important to have support in getting CPAP to work. You also know the importance of getting better sleep with CFS.

Best,

Bill
 

2Cor.12:9

Senior Member
Messages
153
Hi, @Bill. I've had such a hard time getting used to the machine that my doctor allowed me to try it out for awhile capped at 4. One reason I've never been able to sleep with the PAP is that if I do start to fall asleep, there's a big rush of air that wakes me up. My apnea is mild, and the pressure was originally set to 4 with a maximum of 10.

At the clinic, they had told me to try it during the day to help get desensitized to the mask and machine. Once I feel better on it during the day, I'll try it at night, at which point they will raise the pressure.

I'm using nasal pillows, and even at the low pressure of 4, it sure feels like a lot of air through my nose. Even with the humidity set to 6, at the end of the hour my nose was very dry.

Luckily, the clinic is open today, so I have someone good helping me with all this. One worrying thing is that she ran a detailed report on my 58-minute-session the other day, and the 5.2 events were all central apneas. The technician is sending that info to the doctor. She said she doesn't know why centrals would show up if I were awake the whole time.

Oh, well, this is good information to have. I know you feel better after having your central apneas addressed, so I assume I can get better, too, if I get the right equipment and these problems addressed. I have been so spacey lately and feeling something is really wrong.

I went to sign up with the Apnea Board so I can participate in the forums, but Firefox warned me that the logon is insecure there. I will look around for another PAP site. I really think that internet privacy is a lost cause now, but I do pay attention to warnings.

Hi @perchance dreamer - I started out with nasal pillows thinking they would be much easier to get used to but I just couldn't handle it. My DME tech said most of his patients preferred the full mask so I switched. The mask has been so much better and gives me the freedom to talk! ha! It took a couple of weeks to get used to and I still have to monkey adjusting it sometimes. But the benefits of CPAP have been so great that I wouldn't go back now for anything. It has nearly eliminated my brain fog. I have a combo of centrals and obstructive -

I agree with @TiredBill - try to get on the Apnea Board - they're awesome and really helped me get through this. Don't worry about the security. - besides you won't be giving them your credit card or ss # ;) Also, their Sleepyhead program data is so much more detailed than ResMeds - my pulmonologist was even impressed. Best wishes!
 

perchance dreamer

Senior Member
Messages
1,691
Thanks, guys. I think I do need to try another type of mask. I'll join the Apnea Board, but will let them know about the Firefox message I got.

My new sleep doctor, who replaced the one I had gone to for years, said he doesn't treat centrals unless there are at least 10 an hour. I want to find another doctor to confirm that because it sounds like BS to me. Surely it's not normal to have this disconnect with the brain that often.

My old sleep doctor was also a neurologist. This new guy is a pulmonary doctor, as many doctors who go into sleep medicine are these days. I don't think there are many neuro/sleep doctors in Austin anymore.

My sleep has been just awful for a couple of months, but much of that is from sinus infections. I'm on a medicine now that is slowly working, and my sleep is starting to improve. I'll wait until my infection and sleep improve some more before trying the mask again. In the meantime, I'll continue to use my dental device for OSA.
 

TiredBill

Senior Member
Messages
335
Thanks, guys. I think I do need to try another type of mask. I'll join the Apnea Board, but will let them know about the Firefox message I got.

My new sleep doctor, who replaced the one I had gone to for years, said he doesn't treat centrals unless there are at least 10 an hour. I want to find another doctor to confirm that because it sounds like BS to me. Surely it's not normal to have this disconnect with the brain that often.

My old sleep doctor was also a neurologist. This new guy is a pulmonary doctor, as many doctors who go into sleep medicine are these days. I don't think there are many neuro/sleep doctors in Austin anymore.

My sleep has been just awful for a couple of months, but much of that is from sinus infections. I'm on a medicine now that is slowly working, and my sleep is starting to improve. I'll wait until my infection and sleep improve some more before trying the mask again. In the meantime, I'll continue to use my dental device for OSA.

They are aware of the HTTPS issue. There is a sticky on the main page of the general discussion forum that explains their position on their site security.

A doctor who doesn't treat Centrals until they reach 10 an hour is one who makes me do a long time-out before speaking. I'd fire such a physician, post-haste if it were me. In my experience (and being part of an online community) Centrals seem to be strongly associated with fatigue (that's true in my case) and it is important to know the nature of those Centrals (ie how long they are) and to see how much the oxygen levels in the blood ("de-sats" or de-saturations) are dropping.

10 an hour in completely unacceptable and not at all in line with medical standards in the US.

You will find some very highly expert help on Apnea Board. People who have very high levels of expertise.

Please download Sleepyhead software. It is free and to get good advice it will be necessary to look at the data from your SD card. Sleepyhead is free. Then make a thread on Apnea Board. Trust me, this is an amazing resource.

Bill
 

perchance dreamer

Senior Member
Messages
1,691
Yes, I am going to look for another sleep doctor. Even if he hadn't said that about the centrals, this new guy is dismissive and condescending. He also was very reluctant to raise my pressure, saying that the office didn't have the resources to raise pressure willy nilly, and I should wait 2 weeks before making that request.

I miss my old doctor. Can't the doctors I like just practice forever?

I'm looking forward to the apnea forum.
 

TiredBill

Senior Member
Messages
335
Yes, I am going to look for another sleep doctor. Even if he hadn't said that about the centrals, this new guy is dismissive and condescending. He also was very reluctant to raise my pressure, saying that the office didn't have the resources to raise pressure willy nilly, and I should wait 2 weeks before making that request.

I miss my old doctor. Can't the doctors I like just practice forever?

I'm looking forward to the apnea forum.

For a doctor to say his office doesn't have the resources to raise pressures is quite a statement. That said, when one is experiencing central apneas raising pressures if often counter-productive. Not that I'm offering advice here (other than to get Sleepyhead and post on the forum).

There is a wealth of data that is captured by CPAP machines. Typically doctors only get a summary of the data via the built-in cellular modem. In contrast, by using Sleepyhead a user (and others) has access to all the data. It is daunting at first to have so many data points--and I still don't consider myself an advanced user--but there are forum members on Apnea Board who really know their stuff.

With advice, it is easy to change one's own settings and to see the results in the data and in sleep quality.

You will be opening yourself to an incredible resource. No hyperbole there.

Take charge of your own treatment. It is possible that if you, like me, experience a lot of Centrals that you may need a different device as CPAP/APAP/Bi-Levels do not effectively treat Central apneas (and often make it worse). Only due to joining the forum did I gain the knowledge to realize I needed an ASV machine. My sleep doctor, out of the prestigious Stanford sleep clinic, didn't catch that.

He actually congratulated me for being the driving force in getting the device that I really needed. What I knew is that I had great help in that process. Either way, I don't believe I'd have ended up with ASV were it not for the forum. And I'd have been much worse off if that was the case.

See you over there. Be excited about this.

Bill
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
Thanks, @TiredBill, I just signed up on Apnea Board.
Off to the hospital tonight for my second "sleep-over", this time with the CPAP.
I had 40 "events" per hour on my diagnostic. AHI, right?
My lowest oximetry was 80%.
That's all the data I've been given so far.
 

TiredBill

Senior Member
Messages
335
Thanks, @TiredBill, I just signed up on Apnea Board.
Off to the hospital tonight for my second "sleep-over", this time with the CPAP.
I had 40 "events" per hour on my diagnostic. AHI, right?
My lowest oximetry was 80%.
That's all the data I've been given so far.

Best wishes on the sleep study.

Do try to get as much information as possible from those studies as possible (as it is your right to them under the law).

Joining Apnea Board is a very sound move. Here's hoping you feel better soon.

There is both some art and science to optimizing CPAP therapies, but with fine tuning, you should expect to fell much better soon.

Bill