How to best get help?

[absurdlyTired]

(Sorry for the many details on backstory. I promise there are questions below.)

Back in 2012, one night when I tried to fall asleep, as soon as I would start to drift off, I would stop breathing and jerk awake. It came out of the blue (after weeks of some really strange abdominal discomfort - possibly not related). After 3 sleep studies, they determined that I had central and obstructive (mixed) apnea.

Treatment went horribly. I was given an ASV device and they struggled to find a mask that would fit my strange face. Nothing would seal, and I spent thousands of dollars on equipment. A different doc suggested trying to treat the obstructive in hopes that it would help the central, and recommended a straight CPAP device. Never found a mask that fit, had severe aerophagia, wounds from masks, etc. Never was able to tolerate CPAP or ASV.

I was fitted for a $3,700 mandibular advancement device (oral mouth thing) that never showed any results (except teeth pain). I had my deviated septum resolved via surgery.

And after 1.5+ years of struggling, I just sort of gave up. At some point along the way, the immediate stopped-breathing when falling asleep became less frequent, and I just had the occasional waking up choking and perpetual sleepiness to remind me that I had a sleep disorder.

So, I have been in denial, and I have been living a "normal" life. Up until 2 weeks ago, when that serious stopped-breathing while attempting to fall asleep returned. Of course, it was preceded by weeks of digestive and abdominal issues (just like back in 2012). I'm now losing my mind. Severe fatigue, physical symptoms, and the inability to fall asleep. If I'm lucky, I might fight through hours of this cycle until I finally fall "asleep" only to be really just drifting in and out of nightmarish "sleep" for a couple of hours before it's time to start the day.

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ACTUAL QUESTIONS:

1. If I were to go see my old sleep doctor who had ordered the sleep studies, I would need a primary care referral as though I'm a new patient. Should I just try to find a better sleep doc, since this guy was never able to help me years ago?

2. The sleep center that did the sleep study programmed my ASV and CPAP based on my sleep studies back in 2012/2013. Is it safe to try my ASV/CPAP out, or has it been too long? Would it be recommended to get a whole new sleep study before touching those old devices?

3. Does anyone have central sleep apnea here (which I believe is what I'm experiencing with the problem I'm having where I can't fall asleep because I just stop breathing)? Has there been any new breakthroughs in treatment? Medication?

NOTE: I'm north of Boston, MA.

Thank you!

[zonker]

2. The sleep center that did the sleep study programmed my ASV and CPAP based on my sleep studies back in 2012/2013. Is it safe to try my ASV/CPAP out, or has it been too long? Would it be recommended to get a whole new sleep study before touching those old devices?

hello. while you aren't a newbie, i think it will benefit you to read the newbie thread found at the link in my sig. this will help introduce you to the free software program oscar. the thread speaks of sleepyhead. just substitute oscar for sleepyhead and you'll be right.

i'm urging this because i don't see any reason why you can't just fire up your asv, get some charts generated by oscar, then post them here in this thread. sit back and wait for folks to give you helpful advice.

meanwhile, i expect the members here who have asv machines (i don't) will be along to give at least the starting settings for your machine.

oh! are you comfortable setting the machine yourself?

good luck!

oh! part two. the link to the software is in my sig as well.

[Chris8243]

I would suggest starting all over with a new doctor. First doctor did not help so don't go back. Boston should have some excellent choices - Sleep/Respiratory Centers or Specialists? I didn't Google it, but there are good hospitals in Boston, surely there are good doctors. I'd tell them your history but let them do their own thing - new sleep study, etc.

There are probably new styles of masks which hopefully will fit better. There's one now that is a "no mask" that attaches to your nostrils, called Bleep. I can't use it, I'm a mouth breather, but many on the forum really like it.

[Julie]

For one thing, your doctor should have known that regular Cpap does nothing for centrals - if in fact they really were centrals and not just 'sleep-wake junk' (what shows up a few at a time just as you're drifting off or awakening vs lots of clusters throughout the night... there are machines that treat centrals, but not Cpap as such.

[ChicagoGranny]

i'm urging this because i don't see any reason why you can't just fire up your asv, get some charts generated by oscar, then post them here in this thread.

+1

[absurdlyTired]

hello. while you aren't a newbie, i think it will benefit you to read the newbie thread found at the link in my sig. this will help introduce you to the free software program oscar. the thread speaks of sleepyhead. just substitute oscar for sleepyhead and you'll be right.

i'm urging this because i don't see any reason why you can't just fire up your asv, get some charts generated by oscar, then post them here in this thread. sit back and wait for folks to give you helpful advice.

Thanks. I will try to find a Windows device so I can install this. Only have Chromebooks in the house.

[absurdlyTired]

I would suggest starting all over with a new doctor. First doctor did not help so don't go back. Boston should have some excellent choices - Sleep/Respiratory Centers or Specialists? I didn't Google it, but there are good hospitals in Boston, surely there are good doctors. I'd tell them your history but let them do their own thing - new sleep study, etc.

There are probably new styles of masks which hopefully will fit better. There's one now that is a "no mask" that attaches to your nostrils, called Bleep. I can't use it, I'm a mouth breather, but many on the forum really like it.

Thanks. I'm not thinking clearly, and don't know what to do. I tried Googling sleep centers and docs and couldn't find anything with good reviews.

(I'm a nose and mouth breather, and do have a nose-only "mask". I couldn't do it. I have no less than 20 masks.)

[Janknitz]

We can absolutely help you with the mask issues, once you are properly diagnosed and have the appropriate machine or some ballpark for settings. Masks have hugely evolved in all these years and we can really help you work out the issues.

It looks like there are some good centers at Tufts, MGH, and BU. I wouldn't be put off by the reviews. Most people HATE sleep studies and are angry about being told they have sleep issues and need to sleep with a machine. So the reviews tend to be negative if at all. The Tufts program only has ONE review and it happens to be negative, don't let that color your opinion. Teaching hospitals often have the best resources.

Maybe there will be someone here who has experience with a good sleep specialist or one of these programs. Don't be afraid to travel a bit to a better doctor if necessary. The key is not to give up.

[zonker]

Thanks. I will try to find a Windows device so I can install this. Only have Chromebooks in the house.

ha! got a bit of that problem myself. being agnostic, i have a chromebook, win 10 and various apple products laying around. even an old 7" android tablet to hand.

anyway, we'll look forward to seeing some charts, then

[palerider]

Up until 2 weeks ago, when that serious stopped-breathing while attempting to fall asleep returned.

Transition apneas are common and nothing to worry about.
Look at that, an actual answer before the

-----------------------------------------------
ACTUAL QUESTIONS:

1. If I were to go see my old sleep doctor who had ordered the sleep studies, I would need a primary care referral as though I'm a new patient. Should I just try to find a better sleep doc, since this guy was never able to help me years ago?

That seems obvious to me, unless you want to just start learning to treat yourself and to hell with incompetent doctors.

2. The sleep center that did the sleep study programmed my ASV and CPAP based on my sleep studies back in 2012/2013. Is it safe to try my ASV/CPAP out, or has it been too long? Would it be recommended to get a whole new sleep study before touching those old devices?

It's "safe', as long as you don't drop either of them on your foot, that's about the only harm you might get from a cpap.

3. Does anyone have central sleep apnea here (which I believe is what I'm experiencing with the problem I'm having where I can't fall asleep because I just stop breathing)? Has there been any new breakthroughs in treatment? Medication?

See note about transition apnea.

Now, which of the two VPAP Adapt machines do you have, and what *exactly* is the "cpap"? What's the REF number on the back of the Adapt.. (and the cpap)

[absurdlyTired]

Now, which of the two VPAP Adapt machines do you have, and what *exactly* is the "cpap"? What's the REF number on the back of the Adapt.. (and the cpap)

I have:

ASV
VPAP Adapt
ResMed S9
REF 36007A

CPAP
AutoSet
EPR
RESMED S9
REF 36005A

[palerider]

Now, which of the two VPAP Adapt machines do you have, and what *exactly* is the "cpap"? What's the REF number on the back of the Adapt.. (and the cpap)

I have:

ASV
VPAP Adapt
ResMed S9
REF 36007A

CPAP
AutoSet
EPR
RESMED S9
REF 36005A

For future reference, I'd suggest changing your equipment comment to 'VPAP Adapt 36007 and S9 Autoset'.

The 36007 adapt doesn't have ASVAuto mode. but if you don't have much of an obstructive component, you don't need that.

[absurdlyTired]

Found an older Windows notebook, installed Oscar. Here are the results from my VPAP Adapt 36007 and S9 Autoset.

Note: not much data here. I was struggling with this device.

Thanks.

EDIT: Attempt to upload screenshots per suggestion.

[palerider]

http://cpaptalk.com/wiki/index.php/Oscar:organize

[absurdlyTired]

Transition apneas are common and nothing to worry about.

It feels so horrible. I feel so tired, and I just want to sleep. But every time I close my eyes and just start to drift off, it happens.

When I was last experimenting with ASV/CPAP devices, my "transition apneas" (thanks for the term - I honestly had no idea what they were called) were starting to become less frequent. And in the past 5 years of not touching any type of therapy (device, etc), I haven't had this happen even once - until 2 weeks ago.

I can handle perpetual sleepiness from non-treated apnea. But the inability to actually fall sleep - and the physical, cognitive, and emotional side-effects are too much.