should I switch from bipast to asv?

thanks for the reply!
I have met with many pulmonologists who don't seem to care or know anything about sleep apnea and a neurologist who won't give me much information on settings and thinks ASV is not a big improvement- but I heard that ASV is the only machine that can treat centrals and hypopneas? I just still suffer a lot and wake up suffocating sometimes like a truck ran me over and I'm in a fog for 2 days

I just can't get continuous sleep, sometimes only 1-2 hours on the 15/11 setting so I'm going with a lower 12/8 setting, but then I worry that the lower setting won't raise my 75% O2 level, but then the higher setting leaves me feeling tired and I'm only sleeping 2 hours

SWA,
Your Bipap ST machine is totally capable of handling central apneas. That's what the back up timed rate is all about. Changing settings without the foggiest idea why is a bad idea. I think you should go back to your 14/18 prescribed settings and leave it there.

If you are committed to the idea of an ASV, I think you should save up your money and make an appointment with Dr krakow in Albuquerque. Get a serious professional evaluation of your situation...because this random dial winging isn't working for you.
Jamis

sickwithapnea17 wrote:... I have met with many pulmonologists who don't seem to care or know anything about sleep apnea and a neurologist who won't give me much information on settings and thinks ASV is not a big improvement ...

Unfortunately, not all doctors stay current on research - even in their own field of interest. But before you go see another doctor, I and others have asked ... how often do you have central sleep apneas? If it is fairly frequent (more than 5 per hour) your doctor should be able to justify the use of an ASV unit.

sickwithapnea17 wrote:... but I heard that ASV is the only machine that can treat centrals and hypopneas? I just still suffer a lot and wake up suffocating sometimes like a truck ran me over and I'm in a fog for 2 days ...

An ASV will treat obstructive and central apneas. It may not fully address hypopneas, though it typically does better than other devices. But it is VERY expensive. Most units sell for at least $5,000 to $8,000.

sickwithapnea17 wrote:... I just can't get continuous sleep, sometimes only 1-2 hours on the 15/11 setting so I'm going with a lower 12/8 setting, but then I worry that the lower setting won't raise my 75% O2 level, but then the higher setting leaves me feeling tired and I'm only sleeping 2 hours ...

Which is why we note the only real solution for you is to find a doctor and insist that the symptoms be addressed. I know how difficult it can be. It took me years to find my current neurologist. He listened, tested and prescribed to address my objectively observable issues. The sleep study clearly demonstrated issues that needed to be addressed. Generally, finding a board certified specialist will help. But not always.

There is really nothing else the forum can do to help. Especially with central sleep apnea, you need to work with your doctors, since there can be numerous causes and you need to work with them to address the underlying issues.

I agree with JohnBFisher, I think this is outside the realm of what we here on the site can do.

There are specialists in ASV out there (like Dr Krakow in Albuquerque) but I'll bet they're pricy, not to mention the distance and time involved. Having to take a couple of days off and then have to drive or fly there.

So, you may be stuck in the same situation as many of us, like myself...dealing with a not-so-knowing and not-so-caring doctor. You've either got to keep hunting or do like I did...I had to put my foot down in my last meeting with the VA doctor (in a nice way of course) letting him know that something isn't right and that it's not working. He finally set me up with an oximeter, which I am going to pick up tomorrow or Friday. I may end up with O2 in addition to the ASV.

Only a Dr can recommend a sleep study with an ASV titration, that's the only way you'll get there.

well on the original sleep study when I was sleeping better I had about 50 centrals but then my O2 began to fall on the later studies and now I wake up feeling much worse and choking with headaches.

I don't know why they didn't move me to bipap earlier since I had low oxygen and centrals and very few obstructive events or complex events.

Did you have to WAIT MONTHS FOR BIPAP? maybe I've been brain damaged and will never be able to pay back my loans now

I met a private practice neurologist and it was depressing- he told me he had never seen such a severe case for my weight and that there was no cure and that I would be dependent on bipap for life. further he did not tell me how to change my settings and insisted I have a sleep study at his lab. but now I don't want to because he seems to be all profit driven and weird and not sharing setting information even though I paid him

I also met with an ENT who told me I could have 20% improvement after tonsil surgery. but then he told me to clean my BIPAP with bleach so I don't know if I should trust surgery with him?

I developed this disease so suddenly and mysteriously I feel there must be another explanation Churg-Strauss syndrome because I was completely healthy. I developed adult asthma

I really believe that in some cases lower settings can give you better sleep continuity. I sleep better at lower settings with higher AHI of 4.0 than at higher settings with lower AHI

Sickwithapnea17 wrote: further he did not tell me how to change my settings and insisted I have a sleep study at his lab. but now I don't want to because he seems to be all profit driven and weird and not sharing setting information even though I paid him

SWA,
Dude, you really need to read more threads here. What you experienced is completely normal. You paid him for a Neurology consult...not to disclose clinician info on your BiPap.

I'm not saying that this is good...just that this is completely normal within our current healthcare system and certainly no reason to fire the guy. If he wants to run you through another sleep study, if your insurance will cover it, I say do it. It may reveal some new and valuable information.
Jamis

well the neurologist refused to comment on my study since it was not done at his lab? it seems like he may just milk me for 10 visits
I would have gotten a much better impression if he had given me a lot of info on changing settings and given me practical ways to help my hypopneas

but how does bipap st treat centrals, through the back up breathing rate which should be 2 below your average?

the default BPM is 10 it seems so 6 breaths a minute? one every 10 seconds

SWA wrote: well the neurologist refused to comment on my study since it was not done at his lab? it seems like he may just milk me for 10 visits

If you are unsure of his intent, have him write the prescription for a new sleep study and then...take it elsewhere. You have to establish a baseline of diagnosis and treatment somewhere.

SWA wrote: but how does bipap st treat centrals, through the back up breathing rate which should be 2 below your average?

Yes, it's the back-up rate that treats centrals. I also use a BiPap ST but I found that my centrals were best treated at a fairly low BPM rate. I only use a back-up rate of 6. Anything higher made me feel like like my breathing was being rushed.
Jamis

To Sickwithapnea17,
I just wanted to comment to you that your recent posts are more clear and reasonable. Could it actually be that your treatment is working? Hang in there with your Bipap and eventually you may emerge on the other side...
J

you can tell a lot about your doctor I think from the first visit, from whether or not they take notes and how much info they give you and how much medication they prescribe, how they prescribe it and what their philosophy is- maybe it doesn't take a genius to be a great doctor but other qualities
and you can save a lot of money by identifying the bad doctors early and switching

I've finally got it. You behave like someone with autism. Is that it? An inability to communicate or even recognize communication when it's right in front of you.

Hypoxia induced autism...well at least we have a diagnosis now.

Why do you bother with Forum communication when you appear to lack the inability to interact?
J

How much medicine should they prescribe to be a good doctor?