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RE: Too Late? - Mark Douglas - 12-15-2015

Mark I can relate.
I retired early at 55 at considerable loss of income. I was 62 when I started cpap. I was later fifties when I was diagnosed but I was malignant-stubborn and wouldn't accept that I needed it. Boy do I feel dumb! I know in retrospect I deteriorated a lot in the last few years but slowly getting better. I have no experience with Ambien but it's well known as we age our ability to make melatonin decreases so I use liquid melatonin when I am not sleepy at bed time. I swish it around hoping I will absorb some of it sub-lingually and I generally go right to sleep. I also will be getting the blue filtering glasses and I turn all electronics off well before bed time which helps a great deal. I also after about 8 mos still struggle with mouth leaks. Chipmunk cheeks and motorboat mouth. Oh-jeez
I self pay and self manage with the help of the good people here and because of all the DME/sleep doc horror stories. I can set it anyway I choose and don't need no stinkin compliance badge. I have more money in useless masks than my machine so currently I am taping my mouth shut and using a chinstrap with a nasal mask. PITA but it is what works. I don't use the top of the chinstrap just velcro it to my Wisp nasal mask. One less PITA that way. I will try a RespCare Hybrid Full Face on recommendation after Christmas. Eventually if nothing else I will figure out how to make my own blankety blank mask/gasket and no doubt sleep better.
Just do not give up. My mind is getting noticeably better and I have lost a lot of weight ta boot. Currently I have my machine set on fixed bilevel and doing quite well just sick of the PITA mask routine. I did try a sleepdoc to see if he had an answer to the mouth leak problem and his answer was lower the pressure. Well duh! Set it at zero and it won't leak at all. I did out of respect for his years try it his way. I do not see him anymore Laugh-a-lot


RE: Too Late? - GTOdude - 12-15-2015

(12-15-2015, 12:05 PM)Mark Douglas Wrote: Mark I can relate.
I retired early at 55 at considerable loss of income. I was 62 when I started cpap. I was later fifties when I was diagnosed but I was malignant-stubborn and wouldn't accept that I needed it. Boy do I feel dumb! I know in retrospect I deteriorated a lot in the last few years but slowly getting better. I have no experience with Ambien but it's well known as we age our ability to make melatonin decreases so I use liquid melatonin when I am not sleepy at bed time. I swish it around hoping I will absorb some of it sub-lingually and I generally go right to sleep. I also will be getting the blue filtering glasses and I turn all electronics off well before bed time which helps a great deal. I also after about 8 mos still struggle with mouth leaks. Chipmunk cheeks and motorboat mouth. Oh-jeez
I self pay and self manage with the help of the good people here and because of all the DME/sleep doc horror stories. I can set it anyway I choose and don't need no stinkin compliance badge. I have more money in useless masks than my machine so currently I am taping my mouth shut and using a chinstrap with a nasal mask. PITA but it is what works. I don't use the top of the chinstrap just velcro it to my Wisp nasal mask. One less PITA that way. I will try a RespCare Hybrid Full Face on recommendation after Christmas. Eventually if nothing else I will figure out how to make my own blankety blank mask/gasket and no doubt sleep better.
Just do not give up. My mind is getting noticeably better and I have lost a lot of weight ta boot. Currently I have my machine set on fixed bilevel and doing quite well just sick of the PITA mask routine. I did try a sleepdoc to see if he had an answer to the mouth leak problem and his answer was lower the pressure. Well duh! Set it at zero and it won't leak at all. I did out of respect for his years try it his way. I do not see him anymore Laugh-a-lot
Mark, Thank you for your insight and experiences. I think I have had this condition for over 20 years at least. I never got serious with it till now although I have tried xPAP several times in the past. I even went as far as trying a dental appliance ($$!) which was awful. Im serious about it now, have to be cuz if I dont use it 4+ hours a night, Medicare wont pay and Im not independently wealthy!

I use the nasal pillows and started a chin strap last night. My leaks were way down. My breathing patterns are not regular so Sleepyhead shows a lot of spikes. I also have a situation when I try to fall asleep on my own, I get desats and I get a big rush when I realize it. Its just as I fall asleep and scary as heck, so I use 5mg Ambien to get me sleeping. I can get 5-6 hours sleep on that and when I wake up, that's hit. I feel like a zombie.

Sorry for rambling on so much. One possible bright spot: My sleep doc (also a good friend) called me this morning. He wanted to see my latest lab blood work and said I am hypothyroidic and is putting me on thyroid med starting today. I read how that can cause similar breathing etc so hopefully it will help..

Mark




RE: Too Late? - Sleeprider - 12-15-2015

Mark, your leak rate is improving a lot. It's just a matter of time until your sleep becomes more restful. Lots of RERA events still, and it's hard to know what those are all about, but I know when mine are over 1.0, it's been a bad night.

As long as you're doing bloodwork, have you checked your T?


RE: Too Late? - GTOdude - 12-15-2015

(12-15-2015, 01:05 PM)Sleeprider Wrote: Mark, your leak rate is improving a lot. It's just a matter of time until your sleep becomes more restful. Lots of RERA events still, and it's hard to know what those are all about, but I know when mine are over 1.0, it's been a bad night.

As long as you're doing bloodwork, have you checked your T?
Mine is in the semi normal T range as I use Axiron. Maybe that will improve as my treatment goes on.. All I can say is my wife is happy cuz I dont bother her much.. lol!

Mark




RE: Too Late? - Mark Douglas - 01-06-2016

(12-15-2015, 12:30 PM)GTOdude Wrote: ...................I think I have had this condition for over 20 years at least. ..............

I know now this has plagued me since at least my twenties - 40+ yrs ago when I was checked for narcolepsy because I was in danger of falling asleep most of the time. My life has been one train wreck after another and now in my end yrs at least I'll have some good health..
I have written about it here extensively if you are interested.


RE: Too Late? - kwhenrykerr - 07-10-2016

GTOdude I just found your post and read it.

I hope you are doing better. cpcp for me has helped a lot. Wish I had started it years ago. Sleep-wellSleep-well


RE: Too Late? - kdmorris410 - 07-10-2016

(12-12-2015, 02:32 PM)GTOdude Wrote: Have had OSA for many years I would recollect. Now I got all sorts of medical issues and Im realizing OSA is the cause. I feel like a zombie and canst sleep, remember anything, short of breath, zero energy heart condition.. Im finally getting serious about dealing with it but am worried it may be too late for me to turn it around (I'm 66). I had a sleep study which showed my AHI of 36 and O2 desats to 84%. It really wasnt a good study cuz I was on CPAP there for a total of 22 minuted before they booted me out. Got a script for a machine and a DME messed around with me till I blew them off and went to another and got the machine I have now. I did fall asleep with the thing last nite but slept exactly like I did without it, waking every two hours and feeling like crap in the AM. My AHI was 5.71, but that included a few hours wearing it while watching TV so I could get used to it. I feel like im on death's door. Is there any hope for me? Thanks all.

My grandmother was 89 when diagnosed with OSA and began using CPAP at that point. She says it made a huge difference in her life... she is now 93 and still going strong.

It's NEVER too late!


RE: Too Late? - kwhenrykerr - 07-10-2016

Every day of less pain/distress is a great present. What was almost unbearable in the past is now a good day. How each of us handle it can make it a great day.

When I go to my Doctors or into the hospital I see just how good I have it. I got the lessons in end stage care as a caregiver for few years. It was the best and worst thing I have ever done.

Get your head on right and enjoy the ride. The bumps keep it interesting.

Sleep-wellSleep-well