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Losing the will to fight
#21
RE: Losing the will to fight
I struggled with the mask in the beginning. I would wear it for a couple hours while watching television just to get used to it. It took a long time to finally fall asleep with it. I also had anxiety with the mask and had to try a few before deciding on one. I took some natural supplements for anxiety. They contained passionflower, valerian, scullcap, hops. I also took the mineral, magnesium. After time, the mask had become a part of me. Alot of us on this board have been through this. You will persevere!
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#22
RE: Losing the will to fight
In my sleep deprived state I made a silly mistake last night. I forgot to take my SD card out of my laptop and put it back into the PAP machine so I don't have any sleepyhead data to upload today which is frustrating. However, I was on treatment all night, didn't have any aerophagia and slept around 7 hours which is pretty good for me.

I went into the settings part of my resmed machine to look at the sleep report and it said my AHI was 1.1 last night. The last full nights treatment I had was friday night and my ahi then was 3.82 so I think I'm heading in the right direction (I guess it could just be normal fluctuations but time will tell). The leak report also had a green smiley face so that's great. I still woke up quite a few times but hopefully that will improve in the future.

I've already put the SD card back into the machine to ensure I don't make the same error again tonight.
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#23
RE: Losing the will to fight
Things are looking up considerably from when this thread started. Often, if we work to make the therapy comfortable, the efficacy follows. An AHI of 1.1 is something I see myself fairly often, but it is also frequently less than 1. I think you are getting very close to making this work for the long-term. Glad you came to the forum and stuck with it.
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#24
RE: Losing the will to fight
Thanks sleeprider, you've been a big help. You're very generous to give your time to helping people suffering from this awful condition.
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#25
RE: Losing the will to fight
Overall it was a pretty good nights sleep. Probably slept around 7 and a half hours in total. The period roughly between 23:45 and 02:00 I slept without waking once. 2 hours 15 minutes of uninterrupted sleep is very rare for me (it may happen a handful of times per year). Looking at the sleepyhead data it seems that there were no central events in this time period and only one hypopnea. I still woke up 5 times throughout the night. That seems to be because of the central events, hopefully they stop soon. Would ASV be the only option if these central events persist?


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#26
RE: Losing the will to fight
I am also interested to know about ASV .... my CAs have been consistently high since starting therapy. I’m still a little unclear what the relationship is between CPAP, pressure and CAs.
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#27
RE: Losing the will to fight
ASV is an advanced therapy specifically designed to resolve central apnea, hypopnea and periodic breathing. It maintains the airway patent using EPAP, protecting against obstructive apnea, so it is also for complex apnea. We have had members benefit from this when their breathing was very irregular, unrestful and where volume and respiratory rate seemed unpredictable. Neither of you actually fall into the the category where ASV is going to be the primary consideration, mostly because your AHI is not so serious, however I think member Spy Car was in about this same range and he eventually was approved for ASV. The problem is, it's hard to know if you will benefit from ASV without using it, and the machines are expensive. I know of used machines that can be had for about $1000, but this ventures to the dark side of self treatment. I don't think you could hurt yourselves, but whether you would benefit is in question. I think JesseLee bought an ASV and used it for a short period. He didn't need it but found the experience interesting, and eventually went to a Vauto. It's not for everyone, but for those that need it and benefit from it, ASV can be life changing.
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#28
RE: Losing the will to fight
(05-22-2018, 11:07 AM)Sleeprider Wrote: ASV is an advanced therapy specifically designed to resolve central apnea, hypopnea and periodic breathing.  It maintains the airway patent using EPAP, protecting against obstructive apnea, so it is also for complex apnea.   We have had members benefit from this when their breathing was very irregular, unrestful and where volume and respiratory rate seemed unpredictable.  Neither of you actually fall into the the category where ASV is going to be the primary consideration, mostly because your AHI is not so serious, however I think member Spy Car was in about this same range and he eventually was approved for ASV.  The problem is, it's hard to know if you will benefit from ASV without using it, and the machines are expensive.  I know of used machines that can be had for about $1000, but this ventures to the dark side of self treatment.  I don't think you could hurt yourselves, but whether you would benefit is in question.  I think JesseLee bought an ASV and used it for a short period.  He didn't need it but found the experience interesting, and eventually went to a Vauto.  It's not for everyone, but for those that need it and benefit from it, ASV can be life changing.

It was an interesting experience for sure. The ASV machine is completely bizarre for a person that has zero problems spontaneously breathing, such as myself, I do not experience central apnea of any concern. 

In my opinion, a person with normal AHI (0-5) that is still consistently experiencing CA and doesn't begin to feel better using auto CPAP or bilevel CPAP, should definitely be open to the possibility of being on ASV.
The balance is made when conventional methods for obtaining a machine are not available or the process is overly cumbersome or financially unfeasible to the patient needing advanced therapy. 

It's a gamble on the patients behalf to self treat and bypass conventional methods and I believe the decision should not be taken lightly.

If one does decide to take therapy into their own hands, it shouldn't be without reckless abandon to "regular CPAP" therapy. ASV is all of the CPAP therapy plus backup rates that are not capable of being "turned off." ASV, specifically the Aircurve ASV, is capable of fixed CPAP giving one pressure. However, it will not behave like an auto CPAP or bilevel CPAP. It certainly is not an emulator. It will, in fact, provide amazing high tech therapy to those that need it like Sleeprider stated, and many others can testify to.
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#29
RE: Losing the will to fight
(05-22-2018, 07:33 AM)Personxyz Wrote:  Would ASV be the only option if these central events persist?

I didn't mean to overlook or neglect your question, but there are bilevel s\t machines that are capable of delivering bilevel CPAP therapy with backup rate that addresses issues with intermittent breathing like central apnea. The difference between ASV and s\t is in the volume delivery and the adaptive nature of ASV. While s\t delivers a volume of air at pressure and on a timed cycle, it will not adjust to different patterns of breathing which shouldn't be classified as anything other than normal spontaneous breathing. ASV on the other hand will vary and "learn" a patients breathing parameters and deliver the next breath based on how the patient has been breathing previously and when it detects any apnea, the machine has the capability of delivering the backup rate as needed.
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#30
RE: Losing the will to fight
Thanks Sleeprider and JesseLee for the information. There are so many different types of machines it's pretty overwhelming. I just had a look online at some ASV prices, wow they're expensive! They don't seem to be as widely available either which is concerning. Hopefully my APAP machine works for me but if a few more weeks pass and I'm still waking up regularly, feeling fatigued and getting CA events each night I might have to consider ASV.
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