First night: not impressed. Does it get better?

[chunkyfrog]

I like having a drop of essential oil on an absorbent pad lying behind my machine near the intake.
(never add any foreign substance to your water tank.)
Lately, I have a partially opened Yankee candle votive (unlit) in sage and citrus scent there.
The smell is light, and if any scent is too strong, I can move it farther away.
The Pur-Sleep scents are designed for cpap use, --sold by our sponsors. (follow directions carefully)

[BlackSpinner]

Remember the first time you sat behind a wheel? Or held a baseball bat or a golf club or knitting needles? Were you successful? Did you score a home run, a hole-in-one, a lace shawl? Did you manage to park the car beside the curb?

Why should this be easier?

[DEXSUZ]

To Mr. vidiot:


YES, it does get better: way better!. Everything - save for the reaction of your spouse - is exactly as my first month was.


What straightened me out? Two things:
1) I have a good baseball buddy who, it turns out is a CPAP guy. He mentored me through the first torturous month. I am very, very indebted to him.
2) This forum is of inestimable help. All too many of these social mediums are hateful and asinine places to ask for help. You'll never get ridiculed on here; contrarily you'll get common sense tips and lots of encouragement.


My advice to you is to go very slowly and deliberately with your gear. Step one, spend a week here and there sitting - during the day - and reading or watching TV with the gizmo on your mug and the RAMP feature working. You'll get accustomed to all the sounds and feelings that accompany CPAP usage. You might fall asleep but the most important thing is getting to be "friends" with your equipment.


Next, pick an afternoon when you chase everyone out of your domicile (OK, leave the goldfish in the aquarium). Loosen your clothing, put the shades down, take the G.D. phone off the hook and lie on your back in bed with the mask on your face and the machine on RAMP. Relax and think of things you like. As a very, very red-blooded male I'm going to be frank: I pictured myself having wild sex with my wife. (Had this been my frau she'd have pictured herself doing quilting). At some point, you will fall into a little nap that just kind of jumps up on you. When you wake up you'll feel like taking on the world. Do this a few more times at random.


Step three is to totally prepare the machine for use but go to bed at night without it. When you inevitably wake up in the middle of the night, slap the mask on and turn on the RAMP. Your brain will be too groggy to resist or contemplate this 'thing' you're placing on your face. Lie on your back. Do this a few more nights. You'll find that even a few good hours will be better than the old norm.


Finally, pick a night- for me it was Sunday, March 3 - when you are convinced you're totally ready for an all-nighter because you know the machine's functions, sounds, your own feelings, and bodily reactions. Since that date in March, I've logged just about 1,600 hours on my machine. Divide that by 190 days and you'll come out with just about eight hours a night. Have never slept or felt better in decades.


Be patient, Mr. vidiot and you'll be greatly rewarded.

[vidiot]

Last night, I had a lot of problems with leaks. But I did sleep longer and kind of better.

I plan to try the Eucalyptus Oil. I see one poster says to put it in the water, while another poster says to put scents near the intake valve and never put anything other than water in the water tank....

I want to post my SleepyHead results. Should I do it in this posting, or shall I created a new one?

Also, which graphs would be useful for me to display so that people can see what's going on for these problems

Thanks,
Vidiot

[vidiot]

What is your Aflex setting? That's an individual comfort feature and you may have to experiment with it to see which setting suits your inhale/exhale better. Welcome and keep us posted.

I have it set on 2. That's kind of arbitrary. I believe in setting equipment to middle settings until either the equipment doesn't perform properly, or someone tells me that it needs to be somewhere else.

Thanks,
Vidiot

[sleepy1235]

My thoughts.

1. $40 to $50 a month. Someone is seriously ripping you off. Purchase a machine.

2. Make sure your machine records data, not just the hours you sleep but real information.

3. Resperonics System One. Mine was a piece of junk. I got rid of it. The first day with the S9 Elite was a liberation.

4. I used to sleep on my side, but I now sleep on my back. Took a little adjustment, but it worked. The whole problems with the tubes etc. was gone. I also have an oximeter on my finger.

5. Ignore the laughing. You are grown and this shouldn't bother you.

6. If you have apnea you are going to have to use the CPAP machine. The alternative is that you will get worse and worse. You really don't have an alternative. Suck it up and start figuring out how you are going to make this work.

I know that some of this advice doesn't seem very sympathetic, but I think it is best to give very direct advice rather than being indulgent. Aggressively approaching problems is often the best way to solve them.

[caffeinatedcfo]

I started CPAP at the end of March. It took me about a month of wrestling with the quattro mask you have. The DME tech gave it to me because I too was a mouth-breather. However, I could not get the leaks under control and I switched to a nasal pillow mask just to say I tried. This was immediate relief and comfort for me and I do not mouth breathe, because the heated humidifed air delivered directly into my nose keeps my sinuses quite clear. Since then I have been getting a good night's sleep most nights.

Most replacement cushions (the part of the mask that touches your face or nose) range from $20 - $30. Some last longer than others, depending on a number of factors (i.e. oily skin, environment, cleaning habits, etc).

Stick with it brother, you will start feeling better soon. From what I hear (and experienced myself) most of us hose-heads did not end up with the first mask received.

[vidiot]

My thoughts.

1. $40 to $50 a month. Someone is seriously ripping you off. Purchase a machine.

2. Make sure your machine records data, not just the hours you sleep but real information.

3. Resperonics System One. Mine was a piece of junk. I got rid of it. The first day with the S9 Elite was a liberation.

4. I used to sleep on my side, but I now sleep on my back. Took a little adjustment, but it worked. The whole problems with the tubes etc. was gone. I also have an oximeter on my finger.

5. Ignore the laughing. You are grown and this shouldn't bother you.

6. If you have apnea you are going to have to use the CPAP machine. The alternative is that you will get worse and worse. You really don't have an alternative. Suck it up and start figuring out how you are going to make this work.

I know that some of this advice doesn't seem very sympathetic, but I think it is best to give very direct advice rather than being indulgent. Aggressively approaching problems is often the best way to solve them.

You're fine with you're advice. I'm determined to make this work somehow, but I feel like I was led down a yellow brick road by my doctors, that I extended into a fantasy that just doesn't exist in CPAP-Land.
I was wondering about the rental price. I'm stuck with this for the moment, since I am away from home and see if I can get better answers when I get back.

Thanks for the input.

[vidiot]

I finally figured out how to post an image from SleepyHead. I had many leaks last night, which kept waking me up. Rather than clogging up this topic with a SleepyHead image, I started a new topic, which is at this URL: viewtopic.php?f=1&t=92290

Thanks for any help you can give.
Vidiot

[oak]

vidiot wrote: I feel like I was led down a yellow brick road by my doctors, that I extended into a fantasy that just doesn't exist in CPAP-Land.

Vidiot, out of curiosity, what the heck did your doctors tell you, anyway? That it would all be smooth sailing? Not so, but I can attest that it does get better. And the results are pretty extraordinary IMO, over the long term.

[sleepy1235]

One of the continuing themes of the boards is the poor advice apnea suffers have gotten from there doctors.

[mgaggie]

In my case it was lack of information. I was basically given a machine and pushed out the door

[vidiot]

Thanks to all who have contributed to this thread.

I am starting to sleep better.

For those who may come later to read this thread, here is what helped me:

Adjusting the face mask laying flat on my back. Don't do it standing/sitting up. This helped the leaks considerably.
Learning that pulling the side straps on the back of my head in the direction opposite of a minor leak will stop the leak for a while. Note that I am NOT adjusting the tension, just shifting the mask a small amount.
Setting the A-flex on 1.
I set the Minimum Pressure to 6.5, but decided to move it back to 5. After doing the above 3 things, minimum pressure doesn't seem to be a factor in waking me up. It may be a factor for other things, but I'm going to let my doctor decide that.
Learning to not "fight" the machine.

I hope this helps someone adjust in the future. I can't say that I am wild about all this. But most of that is psychological. I am starting to sleep better, and that is my short term goal: to get to where I am sleeping at least as good as before I got the machine. Hopefully, I will be there soon.

[robysue]

vidiot wrote: I feel like I was led down a yellow brick road by my doctors, that I extended into a fantasy that just doesn't exist in CPAP-Land.

Vidiot, out of curiosity, what the heck did your doctors tell you, anyway? That it would all be smooth sailing?

Sleep doc #1 told me, "You will feel better in two weeks." I was not feeling particularly bad when I started PAP and I had NO daytime sleepiness at all pre-PAP. Two weeks later, I was a walking zombie who felt like I was being forced to swallow basketballs each night. Not good.

But it does get better. Sooner for some people and not so soon for others.

To vidiot, it's good to hear you're starting to sleep better with the mask on your nose.

[vidiot]

oak wrote:vidiot wrote: I feel like I was led down a yellow brick road by my doctors, that I extended into a fantasy that just doesn't exist in CPAP-Land.

Vidiot, out of curiosity, what the heck did your doctors tell you, anyway? That it would all be smooth sailing?[/quote]

@Oak,
Basically, this all started with a hearing test. The Audiologist didn't find anything wrong with my hearing outside of normal high end loss for my age. So I don't know if he started drawing straws or what. He said that poor sleep had been shown to cause poor hearing. But he asked me if I ever stopped breathing at night and I told him no. When I relayed this to my wife, she said, "Oh yes, you do!" So I got a referral to a pneumatologist who ordered a sleep study and the rest is history.

I am also ADHD, and I know that poor sleep makes those symptoms worse.

So basically, better sleep=better hearing, and better sleep=less ADHD symptoms which means less trouble for me to get into at home and at work. Which all combined equals a better life all around. So now you see how the yellow brick road turned into a fantasy. Now all I want is a decent night's sleep. At least as good as what I had before.

None of the docs ever said it would be smooth sailing. They said nothing about what the journey would be like. The DME said nothing, and he told me that he used a CPAP as well. So I guess it's nobody's job. But I'm glad y'all are here to help. It ain't y'alls job, but you are great volunteers!