04-11-2017, 03:41 PM
I've tried everything, completely lost
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.
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.
