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I've tried everything, completely lost
#1
I’m at a loss for what to do. I’ve tried virtually everything that I've seen here and elsewhere to do. I have complex apnea, but my average AHI is 1. By all appearances, the apnea itself gets treated. I started on CPAP 8 years ago, and for almost two years been on ASV. I can sleep 3 hours or 14 hours or anything in between and it doesn’t change the symptoms of being shockingly, devastatingly tired. 

A few of the things I’ve tried to fix my sleep:

-Septoplasty and turbinate reduction surgery
-Adjustments to humidity, pressures, etc. on ASV. Tweaked endlessly (but only well after it wasn’t mitigating symptoms), never has mattered. 
-Supplemental oxygen (not because I needed it, but just in case)
-10+ pillows
-Various sleep positions, wedges, etc.
-6+ masks, FFM and nasal (not because of intolerance, but in the name of trying everything)
-Dental device
-EMF shield
-Several ASV machines
-Boil and bite/tongue mouth devices
-Acupuncture
-Hypnotherapy
-Electrotherapy stimulation device
-Chin straps
-Cervical collars
-Multiple mattresses
-Litany of sleep medications, supplements
-Electromagnetic pulse device
-Moved where I live
-5 HEPA filters to completely purify air (for allergies)
-Treatments for allergies/congestion which may be tied to UARS, too numerous to list (shots, rinses, steroids, etc.)
-Other nonsense like snore rings and probably other stuff I’m forgetting

Many thousands of dollars later and multiple titration studies later, I’m more tired than ever. 

My bedroom is a sanctuary. I use blue-light blocking goggles and keep sound sleep hygiene.  I now correct for any mouth leaks with tape, which works. Mask leaks are minimal, well under threshold. 100% compliance and no issues with tolerating mask or the therapy. 

With all this said, the conclusion may be: my fatigue is something other than sleep/sleep apnea. I thought that, too, and have been down many roads across many fields, in countless doctors offices, to figure it out (be it infection, thyroid, hormones, etc etc.) Endless blood and other testing. I’ve taken my health very seriously. Aggressively treated for any possible imbalances or deficiencies. Experimented with different diets, eliminating different things like dairy, sugar, grains. Have heavily supplemented across the board, trialed a ton. Despite restless sleep, overall I have a clean bill of health. I’ve effectively ruled out just about anything other than sleep disordered sleep as the cause. 

My latest sleep study confirms UARS and constant arousals that prevent me from restful sleep. What is odd is the last five months have been noticeably and sharply worse. Adderall used to successfully bandaid the many ugly symptoms (brain fog etc.), but not anymore. Nothing I’ve tried has helped.

I have seen numerous sleep doctors, numerous ENT’s (and had surgery, referenced above), a jaw doctor. Structurally, I’m fine now, in the nose and jaw etc. None of them believe any further surgery would help me at all, as there is nothing obviously wrong.

I want a sleep endoscopy but that will just show me what I already know, right? — that I have sleep apnea (mixed), and yes, my airway gets obstructed. Thus why I’m on an ASV, which again, appears to do the job. 

I’m not giving up. I’m 30 years old, have lost a lot to this, but determined to overcome and live more fully. I’m to the point now though where I just don’t know what else to do, other than a Hail Mary surgery. I feel like there must be research clinics that study perplexing cases like mine. Do such doctors exist, who go beyond the standard treatment and evaluation? Anyone have any suggestions? How can I stop these arousals? 

Where do I go from here??? 

Any guidance or insights would greatly appreciated.
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#2
Hi!  I don't have any insight or guidance I just want to say I'm sorry you are so fatigued.  You sound like my husband who has had every test imaginable and our fall back position is "chronic fatigue". For which there is no test and no treatment.  He's been on APAP for 2 years and it hardly made a difference.  I hope you get to the bottom of this soon and get some helpful advice here.  These folks are terrific!
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#3
It's not going to be easy. So far, you have not posted detailed data. Even though you don't have a lot of events, there might be something we can find that can be improved if we saw the details. You're pretty young, but since you have UARS or complex apnea, it's going to take some digging to find the root of the problem. You're new here, but you know the drill as pertains to therapy data. Let's take a look and see what we might get from the details. You've had a lot of expertise working on your behalf, so no promises, but at least the price is right.
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#4
Thanks sleeprider. So what data points would be best to feature, and how detailed? Breath by breath flow rate near events maybe? What else? 

I can also post my latest titration, though I think it was compromised by mask leaks (they put me on FFM that never fit right, because of mouth leaks, which would be corrected with taping which I was not doing yet for the study). Would an additional test with leaks fixed make sense to do? 

Was wondering also, do we know if treatment of apnea itself can cause arousals? In other words, the increase of pressure wakes up the brain? No apnea event, but arousal, thus restless sleep. One possibility I've thought of, is if there's less obstruction and hypopnea going on, the machine has to work less, and hopefully less arousals. Therefore, surgery like tongue reduction *could* be helpful in treating UARS and arousals. 

And what do we know about the brain and its interaction with sleep like this, constantly waking up? Does anyone know anyone researching and specializing in these matters, beyond apnea treatment?
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#5
I would say to start by organizing your downloaded data in SlepyHead, see mine and SleepRiders signature for the how to. Then add Breath by Breath flowrate surrounding events as you suggested.

While you really seem to have a good handle on what is happening, SleepRider is without peer on interpreting complex apneas.

Fred
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#6
I have nothing that can help you. But I am interested to know if you had your blood glucose tested ? If so what have your Hba1c levels been like ?
Have you done any vitamin deficiency tests ?
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#7
(04-11-2017, 05:48 PM)bonjour Wrote: While you really seem to have a good handle on what is happening, SleepRider is without peer on interpreting complex apneas.

Fred

Wow, I'm going to need a larger helmet!
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#8
lostie42, just out of curiosity how long do you sleep on a nightly basis? The reason I ask is most of my life I thought getting 6 hours of sleep a night was all I needed. When I first started APAP I wasn't seeing the "rested" feeling I had hoped for. Decided to chart my sleepyhead results and how I felt over a few months period. The first thing that jumped off the chart was when I got closer to 7 hours a night I had much better days. I've since adjusted my sleep pattern to get between 6:45-7:15 on a nightly basis and have definitely noticed the improvement. So what if I can't stay up to see who gets voted off DWTS (actually have never seen the program), quality sleep is much more important. I have since read numerous articles about sleep in general and the amount of sleep we require really is a personal thing. I hope you at least have a good day once in a while. Might be interesting to see what happened on those days and try to repeat them.

Really hope that you get some help soon. Please take Sleeprider's advise and post some data. He is amazing at identifying possible problems (don't tell him that, his head will explode).

Bigwink
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#9
Hi Lostie,

I know exactly how you feel, though I am almost 75 years of age, have recently experienced Polymyalgia Rheumatica, an autoimmune issue; prostate cancer; multiple myeloma, a blood cancer; Barettes esophagus; diabetes; chronic sinusitis; etc., so I have reasons for extreme fatigue. As a young person, I really hope that you will find relief somehow and soon! 

Even at my age, few people truly understand how debilitating real fatigue is. The people on this board are truly interested in helping you. Wish I could offer helpful suggestions.

Keep us posted!
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#10
(04-11-2017, 03:41 PM)lostie42 Wrote: I’m at a loss for what to do. I’ve tried virtually everything that I've seen here and elsewhere to do. I have complex apnea, but my average AHI is 1. By all appearances, the apnea itself gets treated. I started on CPAP 8 years ago, and for almost two years been on ASV. I can sleep 3 hours or 14 hours or anything in between and it doesn’t change the symptoms of being shockingly, devastatingly tired. 

A few of the things I’ve tried to fix my sleep:

-Septoplasty and turbinate reduction surgery
-Adjustments to humidity, pressures, etc. on ASV. Tweaked endlessly (but only well after it wasn’t mitigating symptoms), never has mattered. 
-Supplemental oxygen (not because I needed it, but just in case)
-10+ pillows
-Various sleep positions, wedges, etc.
-6+ masks, FFM and nasal (not because of intolerance, but in the name of trying everything)
-Dental device
-EMF shield
-Several ASV machines
-Boil and bite/tongue mouth devices
-Acupuncture
-Hypnotherapy
-Electrotherapy stimulation device
-Chin straps
-Cervical collars
-Multiple mattresses
-Litany of sleep medications, supplements
-Electromagnetic pulse device
-Moved where I live
-5 HEPA filters to completely purify air (for allergies)
-Treatments for allergies/congestion which may be tied to UARS, too numerous to list (shots, rinses, steroids, etc.)
-Other nonsense like snore rings and probably other stuff I’m forgetting

Many thousands of dollars later and multiple titration studies later, I’m more tired than ever. 

My bedroom is a sanctuary. I use blue-light blocking goggles and keep sound sleep hygiene.  I now correct for any mouth leaks with tape, which works. Mask leaks are minimal, well under threshold. 100% compliance and no issues with tolerating mask or the therapy. 

With all this said, the conclusion may be: my fatigue is something other than sleep/sleep apnea. I thought that, too, and have been down many roads across many fields, in countless doctors offices, to figure it out (be it infection, thyroid, hormones, etc etc.) Endless blood and other testing. I’ve taken my health very seriously. Aggressively treated for any possible imbalances or deficiencies. Experimented with different diets, eliminating different things like dairy, sugar, grains. Have heavily supplemented across the board, trialed a ton. Despite restless sleep, overall I have a clean bill of health. I’ve effectively ruled out just about anything other than sleep disordered sleep as the cause. 

My latest sleep study confirms UARS and constant arousals that prevent me from restful sleep. What is odd is the last five months have been noticeably and sharply worse. Adderall used to successfully bandaid the many ugly symptoms (brain fog etc.), but not anymore. Nothing I’ve tried has helped.

I have seen numerous sleep doctors, numerous ENT’s (and had surgery, referenced above), a jaw doctor. Structurally, I’m fine now, in the nose and jaw etc. None of them believe any further surgery would help me at all, as there is nothing obviously wrong.

I want a sleep endoscopy but that will just show me what I already know, right? — that I have sleep apnea (mixed), and yes, my airway gets obstructed. Thus why I’m on an ASV, which again, appears to do the job. 

I’m not giving up. I’m 30 years old, have lost a lot to this, but determined to overcome and live more fully. I’m to the point now though where I just don’t know what else to do, other than a Hail Mary surgery. I feel like there must be research clinics that study perplexing cases like mine. Do such doctors exist, who go beyond the standard treatment and evaluation? Anyone have any suggestions? How can I stop these arousals? 

Where do I go from here??? 

Any guidance or insights would greatly appreciated.

what else could be disturbing your sleep

i felt the most tired when i had no apneas but my wife kept kicking me at night

now the problem is the guy upstairs running the tub in the middle of the night
the dog barking and whining in the apt next to ours
the lawn mowers and trimmers early in the morning
the train that goes by 20x a day
car horns honking when they are opened with those fob devices
spam marketers calling the phone early in the morning

there are all kinds of things that cuold be disturbing your sleep 
i wonder if you are looking for the wrong solution to the wrong cause instead of what is really making you tired

have you had a physical. you could have an illness that is making you tired.
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