Third Night, Rest of My Life to Go

Yesterday was great! I woke feeling rested and relaxed and put in a full day of work without dozing off at all for the first time in ages! After arriving home, a little iced latte kept me awake through Emeril Live, Bobby Flay and an hour of American Idol. WOWZERS! I even had a few fleeting thoughts about doing some crunches and push-ups yesterday!!

About 9 PM, it was bedtime. Last nite, I decided to do the CPAP "straight". Now before ya'll get all twisted up over this, by straight, I mean no nose spray and no Tylenol PM. The first two nites, I used a spritz of nasal decongestant in each nostril and took one Tylenol PM about 30 minutes before turning out the lights and going to sleep. Well, to say the least, last night was NOT good. I couldn't get the mask adjusted right....leaks at the chin, adjusted and then leaks at the top of the nose, then adjusted and mask noises around cheeks, then adjusted and more leaks then adjusted and it was too tight, so loosened and it leaked, etc. I also think I went to bed too early (something that hasn't been happening in years!! LOL). I read until about 10 and then decided it was time to sleep instead of actually waiting until I was sleepy. I managed to doze off about 10:20 PM, woke briefly when the pressure went from 8 to 16, then back to sleep off and on, adjusting the mask all the while, until about midnight. I finally had enough fiddling with the mask and got up, went to the bathroom, and then took a smoke break outside. 20 minutes later, back to bed at full pressure. More leaks, tightening, loosening, tossing, turning. I managed to get a little sleep...until about 2 AM. By then, my nose was stuffed up and I was mouth breathing. Well, I found out that mouth breathing doesn't work worth a darn for me! I woke feeling like I had a hot coal in the back of my throat. At that point, I decided "The heck with this for tonight" and took off the mask and slept without CPAP the rest of the nite. This morning, I was a bit more tired than the last couple of days, but still feeling better than before CPAPing. The good news is that my sweetie is back in bed and she had a wonderfully restful night, the first in a long time!

While reading the postings this morning, I ran across the one about using tissue inside the mask to eliminate leaks. Tonite, you can darn well bet I'm going to try it! Thanks for the tip!

Tonite is another nite and I plan to go back to the nasal spray and Tylenol PM routine. Also, I'm going to wait until I'm good and tired before putting on the CPAP and turning off the light. Tomorrow is a day off for me, so I can sleep as late as I want. HOORAY!!

It sure is great reading all the posts here. Thanks to everyone for the hints, tips and humor! Also, extreme compliments to the website designer. This site has about the best features/functions I've ever seen! Well done![/b]

Keep at it, and let us know how you're doing. I had exactly the same kind of night. In an effort to wean off ambien, I fell asleep using melatonin (one sleep aid for another?) anyway, woke up at 3 AM, chin strap was up around the bottom of my swift nasal pillow. So until 5:30 Am up/down, finally couldn't take it and hit a xanax, low dose. Slept for 4 more hours. I am exhausted today.

But has it happened with any newbies or posters who recall, that the first few wks, when suddenly feeling like you're feeling more alert in am, energy, that BOOM, suddenly hit a few days that seems like a set back? Suddenly thinking, WILL I EVER GET USED TO THIS !!)$U#*(# ?????????

What can we do to overcome these set backs. They are physically draining, and mentally exhausting and questioning our entire process? Getting so dread going to bed.

Oh, to be one who can strap it on, fall asleep, wake up 7 hrs later, and feel great.........Three wks and I'm just as tired as BEFORE I started the last few days, WHAT GIVES?

Any ideas, let me know?

Thanks everybody.........

TXKajun wrote:Yesterday was great! I woke feeling rested and relaxed and put in a full day of work without dozing off at all for the first time in ages! After arriving home, a little iced latte kept me awake through Emeril Live, Bobby Flay and an hour of American Idol. WOWZERS! I even had a few fleeting thoughts about doing some crunches and push-ups yesterday!!

About 9 PM, it was bedtime. Last nite, I decided to do the CPAP "straight". Now before ya'll get all twisted up over this, by straight, I mean no nose spray and no Tylenol PM. The first two nites, I used a spritz of nasal decongestant in each nostril and took one Tylenol PM about 30 minutes before turning out the lights and going to sleep. Well, to say the least, last night was NOT good. I couldn't get the mask adjusted right....leaks at the chin, adjusted and then leaks at the top of the nose, then adjusted and mask noises around cheeks, then adjusted and more leaks then adjusted and it was too tight, so loosened and it leaked, etc. I also think I went to bed too early (something that hasn't been happening in years!! LOL). I read until about 10 and then decided it was time to sleep instead of actually waiting until I was sleepy. I managed to doze off about 10:20 PM, woke briefly when the pressure went from 8 to 16, then back to sleep off and on, adjusting the mask all the while, until about midnight. I finally had enough fiddling with the mask and got up, went to the bathroom, and then took a smoke break outside. 20 minutes later, back to bed at full pressure. More leaks, tightening, loosening, tossing, turning. I managed to get a little sleep...until about 2 AM. By then, my nose was stuffed up and I was mouth breathing. Well, I found out that mouth breathing doesn't work worth a darn for me! I woke feeling like I had a hot coal in the back of my throat. At that point, I decided "The heck with this for tonight" and took off the mask and slept without CPAP the rest of the nite. This morning, I was a bit more tired than the last couple of days, but still feeling better than before CPAPing. The good news is that my sweetie is back in bed and she had a wonderfully restful night, the first in a long time!

While reading the postings this morning, I ran across the one about using tissue inside the mask to eliminate leaks. Tonite, you can darn well bet I'm going to try it! Thanks for the tip!

Tonite is another nite and I plan to go back to the nasal spray and Tylenol PM routine. Also, I'm going to wait until I'm good and tired before putting on the CPAP and turning off the light. Tomorrow is a day off for me, so I can sleep as late as I want. HOORAY!!

It sure is great reading all the posts here. Thanks to everyone for the hints, tips and humor! Also, extreme compliments to the website designer. This site has about the best features/functions I've ever seen! Well done![/b]

I guess I could fall into that category. I had great results from the first night, but now I am feeling like I could sleep all the time. I would say that I am more alert than I have been pre-cpap, but I find myself going to sleep earlier and earlier. Guess my body figured out that I can pay off the sleep debt and wants to as soon as possible?

TxKajun, you are doing great for the first nights, despite the setback you talk about. I went back to re-read your previous posts - you describe things so well!

You have the desire and dedication and creative way of looking at things to make this crazy kind of treatment work for you. Looks to me (I'm no doctor!) that all you need is the right equipment. Here's what I'd change out if I were you:

I'd switch from the 420G (straight cpapyou're using now to the 420E(autopap). That's if you want to stay with the same brand, and the Puritan Bennett 420 series are certainly excellent machines, imho. Loving "C-flex" as I do now, I'd opt for the RespironicsRemstar Auto with C-flex, but at any rate, get yourself an auto instead of staying on straight cpap.

Even if you don't really have trouble breathing at your fixed single pressure, you might find that spending more of your night at lower pressures would be less likely to cause mask leaks.

I read in your previous posts that you use a full face mask, but I don't know which brand. If it's a ResMed Ultra Mirage FF, that's my favorite. If it's not, I'd give that one a try. ResMed cushions are the most comfortable and least likely to leak, imho.

I think you also posted that you were not given a humidifier of any kind. Some people don't need humidification, but when mouth breathing with a full face mask, the mouth and throat sure can get painfully dried out in a short time. I'd get one as soon as you can. And not just "a humidifier." Insist on a "heated" humidifier whether you think you'd want warmth or not. Warm air can carry more moisture. Cool air passing over cool water is not going to pick up much, if any, moisture - next to worthless.

You're really doing super well. You have such a good attitude and sense of humor about it. You're lucky in that you're one of the ones that is getting good results from the start. The right equipment can make it all the pieces of the puzzle fall more comfortably into place for you. Go for it!

rested gal wrote:TxKajun, you are doing great for the first nights, despite the setback you talk about. I went back to re-read your previous posts - you describe things so well!

Here's what I'd change out if I were you:

I'd switch from the 420G (straight cpap) you're using now to the 420E (autopap).

Thanks for the tip! I've been studying brands/features/options and the 420E sounds just like what I need. Now, do you have any tips for convincing my DME to exchange my 420G for the 420E?? I'm going through my insurance company and renting the 420G. I guess that's the base model they provide, so any hints or tips on how I can successfully argue for an upgrade would be greatly appreciated.

I read in your previous posts that you use a full face mask, but I don't know which brand. If it's a ResMed Ultra Mirage FF, that's my favorite. If it's not, I'd give that one a try. ResMed cushions are the most comfortable and least likely to leak, imho.

Yeppers, using the Ultra Mirage FF mask. Like you said, though, maybe switching to a 420E will eliminate or at least reduce the leaks (a good argument for the 420E, no?)

I think you also posted that you were not given a humidifier of any kind. Some people don't need humidification, but when mouth breathing with a full face mask, the mouth and throat sure can get painfully dried out in a short time. I'd get one as soon as you can. And not just "a humidifier." Insist on a "heated" humidifier whether you think you'd want warmth or not. Warm air can carry more moisture. Cool air passing over cool water is not going to pick up much, if any, moisture - next to worthless.

I tried to get the humidifier option, but the recommendation from the sleep Dr. didn't specify humidifier, so my regular Dr. said no humidifier and that his prescription had to be exactly the same as the sleep Dr. recommendation. So, possibly another fight on my hands. Any suggestions??

You're really doing super well. You have such a good attitude and sense of humor about it. You're lucky in that you're one of the ones that is getting good results from the start. The right equipment can make it all the pieces of the puzzle fall more comfortably into place for you. Go for it!

Thanks for the kind words. *blush* Hopefully I'm not boring anyone with my writing. And you also keep up the good work! You are such an encouragement to all of us newbie hoseheads here. Thank you!

TXKajun wrote:Thanks for the kind words. *blush* Hopefully I'm not boring anyone with my writing. And you also keep up the good work! You are such an encouragement to all of us newbie hoseheads here. Thank you!

So far, the folks on here haven't shown much of a tendency to get tired of hearing from people (I should know). If you're afraid you're boring people, you can always throw in a wiseass comment or two.

Make 'em laugh, they forget that you're one boring MF-er.

Liam, one boring MF-er.

Liam1965 wrote: Make 'em laugh, they forget that you're one boring MF-er.

Liam, one boring MF-er.

Liam, if you consider yourself to be boring I'd sure hate to run across anyone you consider humerous!! I'd end up not needing to be a hosehead cuz I'd be dead, dead, DEAD from laffin!

Kajun...who appreciates the shazbot outta Liam's wonderful comments! (And thinks Liam is a bunch more smarter than he lets on!!!)

TX Kajun,
You will probably find that the easiest , least expensive, least heartache route to a new PB420E is to buy directly from cpap.com . That said. If you want to hear all kinds of BS about auto units and insurance companies from your DME go for it. They will tell you it will take weeks, or the doc needs to write a new RX. Insurance wont pay. BS

Call your doc. Explain that you need a copy of your Rx for recordkeeping, travel, insurance whatever. Its your Rx.

Call cpap.com and get the details for ordering. Or . Order online and fax or mail them your Rx.

Pay the $550 for the PB440E and its your in a few days.

I'd buy the humidifier also.

Thats all there is to it. Unless you would rather drag this out into a novella about how the system is stacked against you . We've heard it before from others many times. Just go around it . Buy direct from cpap.com or the other good online company. cpapplus.com

It will probably be less than your deductible.

Cheers,

Chris

Chris,

Thanks for the sane advice. I managed to be intelligent enough to get my scrip Xeroxed and to hang on to a copy of my sleep report (thanks to wise advice here on the board), so that won't be a problem. Also, since I've had 2 good nights out of 3, it seems like I may have time to contact my insurance company direct and talk with them before going off the deep end. So far (at least up to getting me a basic rental unit, hoses and Ultra Mirage FF mask for no cost out of pocket), my insurance company and DME have been fairly reasonable.

I've read with great interest some of the posts about the differences in going direct to cpap.com for an out-of-pocket purchase and trying to get an insurance company to buy one or provide more than just a basic unit. Like a bunch of us here, my patience for dealing with beauracratic BS right now is pretty slim, to say the least! LOL My out-of-network deductible (heck, my IN-network deductible) is pretty outrageous, so it may not really matter where it counts (in my pocketbook) which way I go if I want to get a better unit. I'm going to give things a week or so, though. Like I said, 2 good nights out of 3 ain't bad.

Again, thanks for the sane advice.

TXKajun,
You said you had a high deductible on your insurance, so it might just be cheaper to purchase online. Just a suggestion (hey, it worked for me) if you purchase yourself, still send the bill in to the insurance co. They might use the excuse that they can't pay it because you didn't meet your deductible for the year, not that the provider isn't in network or whatever. If they use that reason, then they need to apply it to the deductible, which means you reach the deductible a lot earlier! So if they don't pay for the machine, they might still end up paying for anything else you need this year, like masks, hoses, filters, etc.
Every little bit helsp.
Debbie

TXKajun,
WHile my insurance/DME also provided my equipment with NOOP, I did purchase from CPAP.com when I had to explore alternative masks in order to find one that worked (UltraMirageFF)--bottom line: do what you have to do.

It's way too common to get that great first night or two, then back to square one, as others have said. Be PATIENT!! and give this up to several months-- tweaking and adjusting things here and there. It WILL get better.

I'd like to reiterate others' warnings about decongestants: WATCH OUT! Sprays ARE addictive--if used longer than 3 days, you WILL get rebound and worse congestion. Some alternatives: if you have allergies, get your doc to prescribe Nasonex or Flonase--I spray before bed every night (instead of in the AM). The total conservative approach is saline nasal spray or irrigation. Go to the healthfood store and ask for a Netti pot (it looks like Aladdin's lamp). You fill this with warm saline (1/4 tsp in 8 oz water) and pour it into your nostril while bending over the sink with your head turned. The water runs in one nostril and out the other. Do both sides. Chronic sinusitis (the prime cause of chronic nasal congestion) is due to a dysfunction of the mucosal lining of the sinuses (and nose) which responds DRAMATICALLY to hydration. Of course, using a heated humidifier with your machine is essential.

Hope this helps!

--snorting away in the bathroom sink---
Grant

Grant and snoozin, many thanks for ya'lls replies. This afternoon, I got on the phone to our company's health plan administrator and talked with the rep who authorized the 420G. He asked me to fax him the info from cpap.com on the 420E, so I did.....just printed the page on it from cpap.com and faxed it to him. Well, to my astonishment, he called back in about 1/2 hour and said he talked with his bosses and they would indeed approve a 420E straight from cpap.com and if cpap.com would take a certain kind of payment from the company (I forget exactly what he called it), they'd pay for it straight out! I darn near fell out of my chair! I've also got a call in to my RT to see if she can help me with my mask and to see what they've got available to rent...mainly to see if I can talk them into switching my 420G for a 420E as a rental for a week or so. This will let me try it and see, cuz the insurance guy said if they buy me the 420E, it was the ONLY one I'd get out of them for quite a while. *g* Ya know, I think I can live with this deal. AIEEEEEEE

Thanks for the info on the nasal spray. I kinda sorta knew about the rebound, but didn't know it could get to be permanent. I've done nasal irrigation before using saline solution, so that won't be a problem.

Does anyone know if it's possible to purchase a humidifier straight from cpap.com without a script for a humidified cpap unit? It would be a straight purchase from me. I've got the script for the cpap unit, but NOT for a humidified unit.

Thanks for all the help. It sure makes wading through this jungle a bunch easier with you folks blazing a trail.

TXKajun,
The humidifier does NOT require a script. Any supplier should sell you what you need. They assume that if you're ordering the humidifier, you must already have the CPAP/APAP, with the appropriate doc's script. The humidifier is simply a water heater--not a medical device....YET!!

Steaming away in Illinois...
Grant