For Veteran Papers - what happens if you take a night off?

[akcpapguy]

I will agree, taking a night off is not an option for me. Tried it a few times about 6 months into my treatment, and started having the old symptoms come back. High Blood pressure, which induced vascular headaches as the day went on and falling asleep on the drive home from work (I was one of those people who would fall asleep at the stop lights), and hitting the snooze for about 1 1/2 hours in the morning and not even realizing it.

I am one of the lucky ones, I also got a TAP Oral appliance before I got out of the Military and use it when I can't use my CPAP due to technical issues. The TAP is only able to get me down to about an AHI of 15, but that's better than the AHI of 93 on my first study.

Oh and the Military doesn't discharge people right away for having OSA. They are given 1 year to find a successfull alternative to using CPAP to treat the OSA. So basically either a TAP or go the surgical route, if they are unsuccessful in either of those avenues they will go thru a medical board and depending on their job (MOS), they will either be retained with a NON-DEPLOYABLE profile or be discharged. I was retained for 2 1/2 years with a N-D profile because I was in the Medical field and I could still successfully do my job without deploying, I also know of MANY more soldiers who were retained with a N-D profile. I used to write the board letters, so believe me when I say, there are many Hoseheads still serving honorably in the Military.

[rested gal]

I also got a TAP Oral appliance before I got out of the Military and use it when I can't use my CPAP due to technical issues.

Now, there's a good thought to pursue, Babette.

Google "Thornton Adjustable Positioner."

And check out the posts under the "TAP and Pillar" section of these discussions:
Clickable LINKS to surgery, turbinates, Pillar, TAP experiences
viewtopic.php?t=2836

Also do a search on this board with no keyword, just the "Author's name" -- snork1 -- and check out his most recent posts.

Snork was able to get off CPAP completely, using a TAP Titanium dental device. If a dental device would work for you (you really need to have a PSG after you've been using it long enough to have gone through the methodical adjusting period) that might be an alternative to use when you can't take a CPAP machine with you.

[akcpapguy]

Good point Rested Gal, a PSG about 45-60 days after they started sleeping with the TAP was the only way that they could get off the CPAP. Typically they would sleep with the TAP while using their CPAP, just so their jaw got used to the device. The Dentist and ENT Dr. would get together every 2 weeks and compare notes on patients to come up with a starting setting that they would sleep on with their cpap prior to their PSG. The night of the PSG, they would start at the setting they had be using for those first 45-60 days, and the sleep tech would titrate, using specific parameters given to them by the Dentist and ENT.

[ScottH]

An interesting perspective...

A typical weekend for me includes at least one "power nap". Before xPAP I had to spend some time catching up from the lack of rest from the prior week. These naps would usually end up being around three hours of deep, drooling sleep--of course, now I know that there was nothing restful about that sleep either.

Today I got back from my Saturday morning karate class, and around 2pm I started to feel that old familiar slowdown, so I decided to go lay down for a bit. Up until now I've skipped strapping on the tech "for just a quick nap", but as I lay down I thought about it. Wouldn't it make sense for a nap to be restful and restorative, rather than just more of the same? So, on it went.

90 minutes later here I am, awake, refreshed and focused! A learning experience indeed. If it's helping me sleep at night, it'll help whenever I'm sleeping.

[Nitro Dan]

Okay, I don't fully get why taking a night off from CPAP would be so terrible.

You know Babette, the only way I really truly learn is by experience. So that may be true for you too.

So try it and see what happens.

Think it through. Don't let these people's horror stories put you off. Find out for yourself.

Try stopping using CPAP for a fixed period, say a week or two. If you can do it, I will take my hat off to you.

For me, I just keep coming back to my beloved M-series Auto

[JohnMudie]

Okay, I don't fully get why taking a night off from CPAP would be so terrible.

You know Babette, the only way I really truly learn is by experience. So that may be true for you too.

So try it and see what happens.

Think it through. Don't let these people's horror stories put you off. Find out for yourself.

Try stopping using CPAP for a fixed period, say a week or two. If you can do it, I will take my hat off to you.

For me, I just keep coming back to my beloved M-series Auto

_________________

She May die on the kitchen table!

Indeed. I call it life...

In order to learn to ride a bicycle, I had to be willing to fall off because I knew that was what happened to people who rode bicycles.

And this morning, in order to drive my car on the streets , I had to be willing to have some-one run into me.

Which actually happened.

So its a risk/benefit analysis we make all the time.

When I remember that she wasn't using CPAP until a couple of weeks ago and seems to have survived so far,

I think she has a good chance.

Babette, how are you going to call this one?

John M

[CollegeGirl]

It's the straw that broke the camel's back principle. All those who have died of heart attacks or strokes as a result of untreated sleep apnea probably said the same thing - I've been fine for years. Why would this time be different? I don't want to scare you - but just like I wouldn't play russian roulette, I wouldn't sleep without my cpap. They make battery packs for cpap that are not bad to travel with. Why would you go without when you don't have to?

[WearyOne]

My sleep study showed RDI of 19 with lowest desat of 84% (average 91%, I think), so I'm not too worried about falling asleep w/o it occasionally. Plus, with other insomnia problems I'm working on, I still don't feel good when I do wear it, just better than when I don't. I know it's doing the job, though, because my AHI is always less than 1 with a leak rate of less than my mask's vent rate.

Last night, for the first time in the three months or so I've been on cpap, I woke up in the middle of trying to take my mask off! I have no idea why, either. I'm also having issues with congestion due to allergies, and have had to jerk the mask off real quick so I won't sneeze two or three times in the mask! (Then I put it back on.)

I imagine anyone with a bad cold with sneezing and coughing a lot would have to go without it then.

[CollegeGirl]

Nope. I've had a couple of bad colds in the two years I've been on cpap. I just use a full face mask and - yep - take my mask off whenever I need to wipe my nose. No, I don't sleep great, but I sleep a lot better than I would without cpap.

I understand that those of you who only have mild apnea sometimes don't see it as a life or death issue, but obviously apnea, even at the mild level, is still a risk factor for more severe medical issues. Personally, even with mild apnea, I wouldn't risk it when it's so easy to just suck it up and wear the darn mask. I suppose, having to gone through the hell I did to get the right pressure and mask setup (a year and a half of trying to get it all worked out), I just don't understand people who don't see it as important enough to use every night.

[akcpapguy]

I hesitate to write this, because it’s a little controversial, but if it helps someone deal with OSA and CPAP like it did for me, well it’s worth saying.

Like I said in a previous post, in the first 6 months of CPAP use I struggled with it. Yes it made me feel better and I didn’t get headaches or fall asleep driving, but damnit I hated wearing that mask every night, let alone the thought of wearing it every night for THE REST OF MY LIFE!

So one day I was talking to a British Sleep Doc who was at the Hospital for a few months as sort of an exchange program. We were discussing patient compliance when I told him that I myself had not been very compliant over the past month or so. What he said next changed my whole perception about OSA and made me really evaluate my perspective on CPAP use.

British Doc: “Why are you trying to mold your disability around your life?”
Me: “What disability?”
BD: “You’re OSA and the use of your CPAP”
Me: “Well OSA isn’t really considered a disability”
BD: “Well you may not be confined to a wheelchair, but every night you are tied to a machine. Infact I consider you more disabled than I am if I don’t use my wheelchair, at least it’s not going to kill me. It makes it a little slower and more difficult for me to get around, but it won’t kill me.”
Me: “I understand your point, but I still don’t really see OSA as a disability.”
BD: “That’s the problem, until you do and adjust your life to fit your disability, you will just be spinning your wheels and suffering.”

As you can probably tell from the conversation this Doc was in a wheelchair, he lost his legs in a car accident when he was fairly young. I know some of you aren’t going to agree with his assessment of OSA as a disability, but I thought I would post it in case it helped at least one person.

[Wulfman]

I hesitate to write this, because it’s a little controversial, but if it helps someone deal with OSA and CPAP like it did for me, well it’s worth saying.

Like I said in a previous post, in the first 6 months of CPAP use I struggled with it. Yes it made me feel better and I didn’t get headaches or fall asleep driving, but damnit I hated wearing that mask every night, let alone the thought of wearing it every night for THE REST OF MY LIFE!

So one day I was talking to a British Sleep Doc who was at the Hospital for a few months as sort of an exchange program. We were discussing patient compliance when I told him that I myself had not been very compliant over the past month or so. What he said next changed my whole perception about OSA and made me really evaluate my perspective on CPAP use.

British Doc: “Why are you trying to mold your disability around your life?”
Me: “What disability?”
BD: “You’re OSA and the use of your CPAP”
Me: “Well OSA isn’t really considered a disability”
BD: “Well you may not be confined to a wheelchair, but every night you are tied to a machine. Infact I consider you more disabled than I am if I don’t use my wheelchair, at least it’s not going to kill me. It makes it a little slower and more difficult for me to get around, but it won’t kill me.”
Me: “I understand your point, but I still don’t really see OSA as a disability.”
BD: “That’s the problem, until you do and adjust your life to fit your disability, you will just be spinning your wheels and suffering.”

As you can probably tell from the conversation this Doc was in a wheelchair, he lost his legs in a car accident when he was fairly young. I know some of you aren’t going to agree with his assessment of OSA as a disability, but I thought I would post it in case it helped at least one person.

Actually, it IS on the list of ADA disabilities.

When I got a bad cold/cough two weeks after starting therapy and had to go off of the machine for 10 days, was what put this whole thing in perspective for me. Even though I had just started and my new sleeping habits weren't solidified, I quickly reverted to feeling drowsy during the days and along with the cough, really felt like CRAP. I didn't want to go back to feeling that way again.

I've actually TRIED to take naps in bed on some weekend afternoons without hosing up (just to see if I could and how I would feel) . After laying there for lengthy periods without being able to go to sleep, I finally put the mask on and I'm asleep within a couple of minutes.
I can do a nap for an hour or less in my recliner (mainly because I'm in a more vertical position to breathe), but not in a horizontal position, anymore.

Den

[akcpapguy]

Wulfman: I thought the ADA just defined legally what a disability is, I didn't know they actually published a list of disabilities. Could you provide me a link to the list, it would prove quite useful.

[Wulfman]

Wulfman: I thought the ADA just defined legally what a disability is, I didn't know they actually published a list of disabilities. Could you provide me a link to the list, it would prove quite useful.

Well.....I probably didn't phrase that correctly...... But, you can find the category of "Sleep Disorders" covered on the Job Accomodation Network website.

You need to go to their website and do some searches based on the categories you want to find.

http://www.jan.wvu.edu/

http://www.jan.wvu.edu/media/Sleep.html

Sleep Disorders and the Americans with Disabilities Act

Are sleep disorders disabilities under the ADA?

The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must meet (EEOC, 1992). Therefore, some people with sleep disorders will have a disability under the ADA and some will not.

A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having such an impairment (EEOC, 1992). For more information about how to determine whether a person has a disability under the ADA, visit http://www.jan.wvu.edu/corner/vol02iss04.htm.

Sorry for any confusion.

Den

[Babette]

Well, here's my perspective - I did this because people complained about my snoring.

Yes, I am fatigued during the day, but NOTHING like the fatigue I feel when I use the CPAP. I don't nap - it's not really something I've ever been able to do. But I do take a definite SABBATH on Sundays, and refuse to do much of anything besides lay on the couch and watch TV. My apologies to the religious who are offended by that.

My tiredness is far more likely related to my weight gain and poor nutrition than it is to sleep apnea. How do I know this? Because I feel so much better when I take a few nights OFF from the CPAP. As of today, I'm feeling much more like I've "caught up" with a week's worth of sleep deprivation, after 3 nights off cpap. I'll try the mask again tonight. I tried the unmodified Breeze a few nights ago and it hurt so bad by midnight I had to take it off.

Now, I've definitely weighed all the input I'm getting, and have visited the sleep doctor on Wednesday. I'm going to keep trying with the CPAP. But I am more and more intrigued with the TAP - particularly the lower cost do it yourself model.

Between my constantly swollen tonsils (since 1980) and the interference from my Uvula, I'm also still interested in surgery.

However, I've figured out that unless I can be compliant for about 6 months to a year with the cpap, I can't be a candidate for the surgery.

So, I thank you all very much. You've given me alot of food for thought, and alot of very good ideas to pursue.

Cheers,
B.

PS - Yeah, I got the dying on the kitchen table comment. I can't think of a better way to go.

[Wulfman]

Well, here's my perspective - I did this because people complained about my snoring.

Yes, I am fatigued during the day, but NOTHING like the fatigue I feel when I use the CPAP. I don't nap - it's not really something I've ever been able to do. But I do take a definite SABBATH on Sundays, and refuse to do much of anything besides lay on the couch and watch TV. My apologies to the religious who are offended by that.

My tiredness is far more likely related to my weight gain and poor nutrition than it is to sleep apnea. How do I know this? Because I feel so much better when I take a few nights OFF from the CPAP. As of today, I'm feeling much more like I've "caught up" with a week's worth of sleep deprivation, after 3 nights off cpap. I'll try the mask again tonight. I tried the unmodified Breeze a few nights ago and it hurt so bad by midnight I had to take it off.

Now, I've definitely weighed all the input I'm getting, and have visited the sleep doctor on Wednesday. I'm going to keep trying with the CPAP. But I am more and more intrigued with the TAP - particularly the lower cost do it yourself model.

Between my constantly swollen tonsils (since 1980) and the interference from my Uvula, I'm also still interested in surgery.

However, I've figured out that unless I can be compliant for about 6 months to a year with the cpap, I can't be a candidate for the surgery.

So, I thank you all very much. You've given me alot of food for thought, and alot of very good ideas to pursue.

Cheers,
B.

PS - Yeah, I got the dying on the kitchen table comment. I can't think of a better way to go.

And, your weight gain was more than likely caused by your OSA.
By taking "nights off", you're un-doing the benefits of the nights you're using the therapy.

Just out of curiousity, do you use heated humidity or cool (passover)? I can't handle the heated and the cool air helps to open my nasal passages for better breathing.

Den