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ASV treatment working - Health hasn't improved.
#1
ASV treatment working - Health hasn't improved.
Hi all,

Having a few dramas with my treatment and was wondering if anyone has had similar experiences or could help me figure out what the issue is. To set the scene, i'm a young very healthy male (26 years old) with no medical history (including heart problems or stroke) with diagnosed central sleep apnea. In my sleep test, I had an AHI of ~25 which was composed of 95% central events. I've had extreme fatigue/brain fog majority of my life, with an inability to function properly without extreme doses or caffeine or narcolepsy drugs such as modafinil.

Originally I was prescribed a CPAP machine which changed absolutely nothing, so I got a second opinion and rented an ASV machine for a few months. This reduced my AHI down to below 1. After a few months of this treatment, my fatigue levels have not changed and i'm still struggling to function every day without drugs. I've ensured I don't take any post lunchtime to help with my sleep, but this doesn't seem to make a difference. Sleep length is ~7 hours per night. Architecture would be average-reasonable, I find it difficult to get to sleep with the machine, but usually stay asleep for most of the night.

Due to the lack of information on the web for CSA, I guess what i'm trying to ascertain is whether or not someone on this board has experienced something similar, where there was an underlying cause that contributed to their fatigue/central apnea. Essentially, i'm hesitant to spend out the ~5k for an ASV machine that cures my apnea, but not my fatigue.

Any help would be greatly appreciated. Can post data/sleepyhead screenshots if would help paint the picture, but my ASV results are near perfect with only 1-2 events per night.

Thank-you.
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#2
RE: ASV treatment working - Health hasn't improved.
Sorry you're having such a hard time. Yes, post SleepyHead shots. They almost always help for getting input.

There very might well be adjustments that will contribute to getting at least a little better sleep. Also, it might be possible from the charts to see what kinds of issues you are having (as opposed to just the number of events).
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#3
RE: ASV treatment working - Health hasn't improved.
You certainly have an unusual condition for such a young age, and I too feel mine is unusual even at my age and excellent physical condition.  That being said, it's been a long road for me moving from diagnosis to CPAP, and finally on ASV. 

I have no (known) reason to have CA but since starting ASV just a few weeks ago, I'm sleeping so much better, feeling much better, and not near as tired.  Hopefully you will start feeling better soon.
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#4
RE: ASV treatment working - Health hasn't improved.
Paping somtimes can take months before your body repairs itself afterbeing all the damage possibly for years. So have patience. Also try posting using sleephead like Halfasleep suggested. Instructions for posting is in my siginature.
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#5
RE: ASV treatment working - Health hasn't improved.
You're an aussie, get to a public hospital to get a lab titration study, or use private insurance if you have it. You should have neurologists in your team of doctors too. There is no need to guess at anything. If you have a health care card, the hospital will supply a machine. You need to treat the apnea, leaving it will only cause more problems down the road.

Pick up a secondhand one. getting one in australia is hard, but they are there. I don't think the people who stop using asv would be as large a pool as those who stop cpap, but there are near new machines out there.

Import from the US is a real option. For a new machine, I'd contact one of the amazon sellers for an ASV price and use a reshipper A couple of suppliers here, secondwind have them secondhand. They will ship to australia. They may also match price on a new one.
Disadvantage is doing an insurance claim as the unit has to be sent back to the US.
http://www.apneaboard.com/forums/Thread-...plier-List
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap, from machine data or software. You can set the min pressure 1 or 2cm below 95%. Or clinicians commonly use the maximum or 95% pressure for fixed pressure CPAP, this can also be used for min pressure.
https://aasm.org/resources/practiceparam...rating.pdf
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#6
RE: ASV treatment working - Health hasn't improved.
Hi HitAus,
WELCOME! to the forum.!
Hang in there for more answers to your questions.
Make sure you post some data so others can help you get your therapy fine-tuned.
#sleepyhead software is great to use for data-management.
Good luck as you continue CPAP therapy.
trish6hundred
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#7
RE: ASV treatment working - Health hasn't improved.
Hi HitAus,

Welcome First thing, be assured you're not the only one dealing with Central Apnea, or Apnea in general. I know you know that, but this group of apnea patients will do whatever it takes to assist you. They did assist me with my journey, and it's not always fun or easy, but it will get better with time. I happen to have Mixed apnea due to the centrals coming out due to PAP therapy. I had a BiPAP PSG this past March, where it showed 124 centrals to 24 obstructive. I had to play the insurance game of failing BiPAP therapy before I could convince the pulmonary doctor to consider ASV. That entire process was around 2 more months with little to show for the results of the fight. But 3 months ago, I finally got the needed tool, my ResMed AirCurve 10 ASV.

It took me 3 solid months to dedicate to making myself use the ASV before I even felt like it was doing any good. Note that in my estimation I had lived with untreated and undiagnosed apneas due to being overweight for about 23 years, but of a certainty more than 15 years. It's an underestimate to state I have a big sleep debt that I owe. But like I just said, with 3 good months on the ASV, this is beginning to pay off. I'm pasting in my Newbie thread here for you to read if you wish to understand where I was and where I am now. Newbie: SarcasticDave94

So, yes, there are others that know what you're dealing with, at least on a reasonably similar situation. Stick with AB and the ASV, and you will see it begin to reward with the sleep results you need.

Best wishes on the future success,

Dave
lots-o-coffee
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: ASV treatment working - Health hasn't improved.
G'day HitAus. Welcome to Apnea Board.

There are a couple of trains of though running through my head, some of which might be useful for you.

The first is that your original provider didn't have a clue. Prescribing a CPAP when you have 95% centrals is just either lazy or incompetent. And this isn't America where they have all those stupid insurance rules which end up costing everybody a lot more that just going straight onto ASV.

Putting the apnea aside for a moment, there are multiple causes of fatigue including vitamin / nutrient imbalance, thyroid problems, various drugs and their interactions, heart & lungs (which you've had checked), acute rheumatic fever, chronic urinary infections, fibromyalgia and chronic fatigue syndrome. Also clinical depression. I assumed you've had all these things checked out?

For central sleep apnea the ASV machine is the gold standard and is remarkably effective for most users (including myself). You mention you've hired a machine, which implies that you're working with a clinic who have helped set this up for you. The fact that your AHI is consistently low means you don't need a titration study. However, a low AHI is not the only factor at play, which is why it would be good to see some details from #SleepyHead. Issues such as persistent leaks can disturb your sleep, and consistently high leaks prevent the machine diagnosing apneas correctly. There may also be other factors which show up in the charts.

If you do decide to purchase an ASV, do some shopping around first. They are expensive but it is possible to pick up a (relative) bargain. The full retail price in the States is the same as Oz, or slightly higher. However Supplier #2 often has some good deals on "new old stock" or "gently used" machines. There are also some resellers on Amazon, but a lot of those won't sell outside the US. Once you have a particular purchase in mind, come back for an opinion.
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#9
RE: ASV treatment working - Health hasn't improved.
I'm in the same boat as you... 31, perfectly healthy, extremely fatigued with all central apneas. Prescribed the wrong machine, etc.... finally after a few months, I just started the Auto ASV a few days ago. Before, I was on the bipap and finally, because of this forum, was able to get my settings to something tolerable.... I noticed that after about 3 weeks with the settings more appropriate (as appropriate as can be for Central apnea with a bipap and no timer) I absolutely was feeling better overall. Fog was starting to lift, aches and pains going away etc,. There are some things you should consider, eating right, setting your alarm in conjunction with your sleep cycles, use something like " http://www.Sleepyti.me " to help with that, 90 minute cycles. Exercising a bit more to help your lung function, posture etc. Those things absolutely helped me feel better overall. Granted, i have an infant, opening up a business, just bought a house...so the stress is tremendous, and those things can and will absolutely affect you, regardless of the apnea. I still feel pretty sh**ty without caffeine. I've tried quitting and that seemed to help my sleeping and overall restless legs, but at the end of the day I simply feel like my life is just a bit too exhausting. With that being said, maybe you should take inventory of everything going on in your life. I know it's not medically sound advice, but consider what's going on and rule out any lifestyle choices outside of caffeine etc to see if there's something there contributing to your fatigue.
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