RE: would DISE help me ?
(03-21-2019, 05:28 PM)Sleeprider Wrote: You need to decide if the changes in pressure are more disruptive than a few recorded events. Seriously, I have anywhere from zero to 2.6 AHI depending on my night, and to me, that range is all tolerable and makes no difference. You have aerophagia and you are sensitive to pressure. I would think that is your priority over a few minor events. We are not trying to achieve 0.00 events here, we want you to sleep well and comfortably. You are very close to meeting your needs, but a third party, me or your doctor, can't tell you what is best for you. This is where you become the expert. You have all the tools and knowledge you need to achieve your best results. You can use your acquired knowledge to help yourself and others on the forum...welcome to the graduate class. You are the owner of your therapy and simply need to make the decisions to use what works for you.
you are right sleeprider, thank you. but if i did not speak to you today, i wouldn't have tried S mode maybe, so it helps taking the opinion of more experienced users.
i will try again and re-assess.
RE: would DISE help me ?
One more question : my insurance can pay for biLevel titration study, do you suggest that i do it? or it will be a waste of time after all these trials i did ?
RE: would DISE help me ?
(03-21-2019, 06:55 PM)sleepyzzz Wrote: One more question : my insurance can pay for biLevel titration study, do you suggest that i do it? or it will be a waste of time after all these trials i did ?
After many years of helping members here, I think it's a waste of time. I am yet to see the clinic that uses a scientific method to solve a problem. Everyone out there is conducting "scripted" studies to find problems covered by insurance. They want to know your AHI, rather than your problems with aerophagia or even sleep disruption. Sorry to be so pessimistic, but sleep clinics don't exist to solve problems, they qualify patients for coverage by insurance.
RE: would DISE help me ?
(03-21-2019, 10:02 PM)Sleeprider Wrote: (03-21-2019, 06:55 PM)sleepyzzz Wrote: One more question : my insurance can pay for biLevel titration study, do you suggest that i do it? or it will be a waste of time after all these trials i did ?
After many years of helping members here, I think it's a waste of time. I am yet to see the clinic that uses a scientific method to solve a problem. Everyone out there is conducting "scripted" studies to find problems covered by insurance. They want to know your AHI, rather than your problems with aerophagia or even sleep disruption. Sorry to be so pessimistic, but sleep clinics don't exist to solve problems, they qualify patients for coverage by insurance.
That was my experience with sleep doctor/DME/sleep study unfortunately!
Thank you SleepRider for the honest opinion.
BTW i tried mode S 4/10.6 last night, and i feel almost same with VAUTO. (half zombie).
i'm going to try to increase EPAP to 4.4 and note the difference. then lastly 4.6.
Next i have to figure out if increasing or decreasing PS is the right route.
then compare S and Vauto modes.
RE: would DISE help me ?
Good luck with your tests. To be clear, a surgical solution may end up being what works for you. I think it is worthwhile to work through the positive pressure route before entering that realm.
In my previous response, I mostly discussed sleep clinics' approach to diagnostics; but titration is much the same. Their end-point for successful titration is a low AHI, not a comfortable setting, or concerns about arousal or aerophagia.
RE: would DISE help me ?
(03-23-2019, 08:01 AM)Sleeprider Wrote: Good luck with your tests. To be clear, a surgical solution may end up being what works for you. I think it is worthwhile to work through the positive pressure route before entering that realm.
In my previous response, I mostly discussed sleep clinics' approach to diagnostics; but titration is much the same. Their end-point for successful titration is a low AHI, not a comfortable setting, or concerns about arousal or aerophagia.
Hello Sleeprider, i have not done the DISE yet, but i have been reading more about UARS, specially dr Park book "sleep interrupted" , when he described UARS patients, it was like he was describing me : ( narrow throat, small jaw, crowded teeth, cold hands/feet, family history of snoring, GERD and LPR, light sleeper, continuous arousals at night with RERAs, no deep sleep, extreme fatigue and sleepiness through the day, deviated septum ) !!!!
What threw me away of UARS before was most of UARS patients did not have apnea and scored very low AHI in sleep study while mine was 17 AHI/hr and 42 AHI/hr in REM. but the doctor said they are not mutually exclusive, also people with UARS could turn into apnea as well.
He was also talking about a patient of his who had mild OSA and UARS.
I am surprised that when i described my symptoms here on the forum or others, or to all my sleep doctors and ENTs, no one immediately jumped to the conclusion of UARS ! why it is not that famous if it is studied ? why when someone says i keep waking up all night and have fragmented sleep, when looking to his low AHI graphs in sleepyhead, UARS is not the first thing that comes to mind ? reading that book last night was like a WOW factor for me.
Treatment: it all comes to treatment, and again there is a mix of cpap, oral device, and surgery.
i won't talk about surgery here, although i am starting to consider it as a relief from my daily suffering. ( the dotor said that a UPPP has a success rate of %40 only ).
I have been reading that oral device had a lot more negatives and might not relief UARS patients as well.
I also read about people who use very low pressure and people who need high pressure to stabilize the airway so that nervous system does not trigger the sensors that throat is collapsing and wake the brain out.
As you can see in my graphs, i have been struggling with my numbers, the only thing i could not try is higher pressure. when i exceed EPAP 7 i start having aerophagia.
My question to you do you see anything i can try with my bilevel machine under the UARS light ?
thank you
RE: would DISE help me ?
I hope I have not been remiss and failed to point you to this wiki article on Apnea Board http://www.apneaboard.com/wiki/index.php..._and_BiPAP
I think that should answer your question, but if not, let me know.
RE: would DISE help me ?
(03-27-2019, 08:22 PM)Sleeprider Wrote: I hope I have not been remiss and failed to point you to this wiki article on Apnea Board http://www.apneaboard.com/wiki/index.php..._and_BiPAP
I think that should answer your question, but if not, let me know.
I have read Dr Krakow post before, but I re-read it again now and while I understand what he said, I don't know how to apply it to my own machine.
So assuming I have UARS and that is why I keep waking up, looking at my previous trials , I tried EPAP from 4 - 8 with PS from 4 - 7.2 and IPAP fixed or open.
The doctor said UARS patients like to keep epap low( true) and the gap high.
Based in my findings, I want to keep epap at 4. And I don't have problem with increased PS but once I pass PS 6.6 I start seeing CAs, a lot of them at 7.2
So in that range of numbers, I still don't have therapy to treat my symptoms. Also flow limitations are anywhere from 0.3 to 0.9 anywhere in the range of numbers I could tolerate, so I couldn't get rid of flow limitations either.
what do I do? If I'm stuck at EPAP 4 to max 7 and can't go beyond PS 6.6 before seeing CAs, what else can I do to use the biLevel to treat UARS?
03-28-2019, 08:28 AM
(This post was last modified: 03-28-2019, 08:30 AM by Sleeprider.)
RE: would DISE help me ?
The only solution I can think of right now is to try gradually higher minimum EPAP pressure at a pressure support you tolerate. I don't know the range of pressure setting you have tried, but it sounds like you have systematically tried at least a wide variety of PS settings.
If you have upper airway restriction, and want to investigate surgical solutions to resolve them, you may not need DISE, unless the problem is only manifested in sleep. Nasal endoscopy using a local can likely visualize the problem and allow you to get options. If this is strictly a sleep related upper airway restriction, your doctor can decide if DISE is the best option to diagnose it. You seem to have give bilevel therapy a try at a wide level of settings and you are still dissatisfied with the results. You apparently understand most of the pros and cons of a surgical approach. My original caution in this thread was not a rejection of the surgical option, but that you go in with your eyes wide open. In addition, it was my intent to point out that DISE cannot isolate the cause of your arousals, rather it can identify physical restrictions that exist in the absence of positive pressure therapy. If that is what you have left, it is probably worth investigating.
|
