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Hi all, I was diagnosed with SDB 5 years ago, but I found sleeping with the CPAP the worst night's sleep of my life. Given the alternative of 3 surgeries, I chose no treatment. I take adderall for ADD, so I'm usually fine. Then about 6 weeks ago, it all fell apart. I'm waiting for appt with a new really good sleep doctor, but have seen a couple other doctors recently who blamed stress. Ugh. So my questions are, in the absence of any lifestyle changes, is there anything that could exacerbate this condition so significantly? And is it just "status quo" or whatever for the report to mention parkinsonism or other neuromuscular disorder should be considered?

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Sometime the patient will benifit with both a dental device and CPAP working in tandum
Right on, DW, and I'll be talking to my dentist about this very subject again shortly when I go in for my regular tooth polishing job. We discussed this lower priced dental appliance last spring as a way to help keep my mouth shut during my deepest sleep.
So you want to keep your mouth closed, Judy? That was the worst part about the cpap for me, the way it sucked my mouth closed. Then I can't breathe. I wonder if sometimes you still need to have septoplasty (?) or adnoidectomy (?), even with pap.

Judy said:
Right on, DW, and I'll be talking to my dentist about this very subject again shortly when I go in for my regular tooth polishing job. We discussed this lower priced dental appliance last spring as a way to help keep my mouth shut during my deepest sleep.
Well, I'm not a fan of any surgery until and/or unless I am dead and dying. I've found the full face masks tend to push the lower jaw back. And chin straps help but are not particularly successful either. And, yeah, sometimes septoplasty might be needed for successful CPAP therapy. I have little to no cartilage left in the jaw joints w/o it causing any pain or other problems - so far, and I'd like to keep it that way.

What masks did you use that the PAPs sucked your mouth closed???
Ditto on the surgery only in life threating situations, Judy.
Ok since u apparently don't experience the suffocating, mouth being sucked closed feeling, I started wondering if I'd fabricated it. Tho I know I didn't bc it was very memorable. So here's what I found:
Nasal mask that suctions to face, side straps
The mask covering the nose supplies air pressure and suctions to your face while the CPAP machine is running. Side straps keep the mask in place.

Might be good if:

You move around a lot in your sleep — both the suction of the mask to your face and the side straps help keep it in place
Your doctor has prescribed a high air pressure setting — the suction of the mask to your face maintains a good seal, so air doesn't escape
it's good news that not all have that effect. I mean, my nose is completly unbreath thru-able by the time I wake up.

Judy said:
Well, I'm not a fan of any surgery until and/or unless I am dead and dying. I've found the full face masks tend to push the lower jaw back. And chin straps help but are not particularly successful either. And, yeah, sometimes septoplasty might be needed for successful CPAP therapy. I have little to no cartilage left in the jaw joints w/o it causing any pain or other problems - so far, and I'd like to keep it that way. What masks did you use that the PAPs sucked your mouth closed???
I use a full face mask.. I tried the nasal but I opened my mouth just for a second..and it felt like a hurricane rushing out of my mouth.. took my breath away..and I could NOT rip that sucker off my face fast enough.

My full face mask..covers my mouth and nose.. and I KNOW I open my mouth a lot while I am sleeping....even BEFORE I fall asleep. The air that is blowing into my nose AND mouth is awesome feeling. it actually opens UP my sinuses...it is like I am breathing better than I have all day long.. my mask and I have a blissful relationship.. ( wink)...If I feel like I can't feel the air.. I simply rest one hand
above the exhaust vent on the mask and feel all the air blowing on my hand.. and I instantly feel like I am breathing better and deeper and am aware of all the air flowing that I am breathing in. I used to snore like a freight train.. ( sucking in the walls?? )..and kick my legs a LOT while I was sleeping.. I never knew it..or woke myself UP.. and since using my CPAP
I DO NOT snore at ALL anymore..and very rarely even move my legs at night.


Paige said:
... I only wore cpap during the titration study & I can't remember exactly but I think it was like an oxygen mask covering my nose & mouth. I guess I like to breathe thru my mouth since my nose is always stopped up. But every time I opened my mouth it sucked it closed like a vaccuum or something? Am I remembering it wrong? I felt suffocated all night

Hi Paige,

Welcome to the forum!

Please don't let your first and only time on CPAP (during your sleep study/titration) affect your decision. In spite of all the efforts of the sleep tech and the work that's put into making the environment as comfortable as possible, the nigh in the lab is not a typical night for you!

I, too, have had a stuffy nose for years. Since I've started on CPAP, it's gone! I guess the pressure of the CPAP keeps my nose passages clear, though I did use some nasal spray for the first few weeks.

I use a nasal pillows mask, and my wife and kids get a laugh out of the fact that I open my mouth and the air comes rushing out! My son, a Star Wars fan, always tries to get me to talk once I put on the mask, so he can hear my "Darth Vader" voice.

The fact is, I'm far more healthy, calm, and productive since starting on CPAP. Through a vacation, business trip, and a few colds, I have not missed a single night on CPAP, and my average time per night on it is 7 hours 37 minutes.

So, don't give up, and stay around the forum asking questions and getting answers!


Rooster said:
Do what you should have done five years ago - make a commitment to being a CPAPer. Get educated about CPAP. Use the help of the patient forums. Take charge of your therapy - the medical professionals can't do it for you.

Very important - get a data capable machine with software which will allow you to see how the therapy is working. A graph is produced daily which is a minute-by-minute time line of the night showing apneas, hypopneas, snores, pressure, mask leak, etc. This is critical to becoming a dedicated and healthy CPAPer. I would bet you did not have this five years ago.

Be aware that many patients start out CPAP with the wrong machine/wrong mask/wrong pressure settings - they are setup to fail. This could have been you five years ago.

If you have insurance, get a new sleep study since the condition is progressive and may be worse than five years ago. Make sure your sleep lab is accredited.

BTW, sleep deprivation caused by untreated sleep apnea is often the underlying cause of ADD.

Good luck and hope to see you on the forum.
I would like to ask a couple of things in Rosters comment below, but this thing keeps messing around and won't let me reply any way but this one.
First of all how would I know if I had a data capable machine? How do I identify one?
Secondly where would I get this software you mention.
I also have a bad blood pressure problem which is being helped by a data capable BP meter and software so I am a little familiar with such things.
I am not sure I trust VA doctors here in NY state. My first doctor told me if I didn't like seeing my BP high then I should stop taking it. For a year she refused to believe anyone except herself and or her coworkers that I had high BP. This included hospital personell who were worried when my BP hit 190/100 before and after I had my last surgery to fix a carotid artery that had just caused a second stroke. Instead she insisted my BP was to low for her to give me any high BP medications
I would like to ask a couple of things in Rosters comment below, but this thing keeps messing around and won't let me reply any way but this one.
First of all how would I know if I had a data capable machine? How do I identify one?
Secondly where would I get this software you mention.
I also have a bad blood pressure problem which is being helped by a data capable BP meter and software so I am a little familiar with such things.
I am not sure I trust VA doctors here in NY state. My first doctor told me if I didn't like seeing my BP high then I should stop taking it. For a year she refused to believe anyone except herself and or her coworkers that I had high BP. This included hospital personell who were worried when my BP hit 190/100 before and after I had my last surgery to fix a carotid artery that had just caused a second stroke. Instead she insisted my BP was to low for her to give me any high BP medications
Jim, You need to look at your machine and tell us exactly what brand and model it is. Somebody here should know or be able to look up if it's a data capable machine. As an alternative, with this same information you should be able to go to the brand web site and check the specs. But first tell us exactly the brand and type of machine- all the info available to you.
Mary Z.
Ditto.

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