Second Guessing My Purchase

[MoneyGal]

That, too, is your body keeping you awake, upright, and breathing. We're not psychic - we've all just been there.

[BeanMeScot]

And to my friendly forum psychic, you are right! I do have spells where I will get up six or eight times a night to pee. LOL Doesn't happen all the time. More like, every night for weeks, then I'll get a break, then back to every night. It is so weird and unpredictable!

See, I told you! The more you get up during the night, the worse your apnea. With you getting up that many times, you probably have severe apnea. My apnea was fairly mild so I usually only got up once. I don't get up anymore!

So I would say your purchase is a REALLY good one. You really need to get the apnea under control. If you do, you will see good results in your health. Your diabetes will come under better control and might even go back to pre-diabetic levels, among other things.

[Cassandra]

Well it is here now. I am wearing the mask and watching the included video with my five year old. he keeps poking at the tube. He thinks it's funny. (LOL It DOES look funny.)

I'm going to carry on watching the instructions, then see if i can get it running. I will report back. I am sure you are all on the edge of your seats to hear how it goes. LOL

[jdm2857]

I'm 2 weeks ahead of where you are now. Go for it!

And be sure to post back tomorrow (and with any questions that occur to you today, too).

[TerryB]

Casandra,
You've probably already noticed that if you click on your posts where the machine is described the forum software will take you to the CPAP.COM store site and tell you a lot about your machine AND its ability to describe your treatment without the need for software.
Congratulations, you can easily get the basic information and see how adjustments work out very quickly.

Did it arrive yet?

Good Luck,
TerryB

[Cassandra]

Casandra,
You've probably already noticed that if you click on your posts where the machine is described the forum software will take you to the CPAP.COM store site and tell you a lot about your machine AND its ability to describe your treatment without the need for software.
Congratulations, you can easily get the basic information and see how adjustments work out very quickly.

Did it arrive yet?

Good Luck,
TerryB

I hadn't noticed that yet. Thanks. That's awesome that I can get some data without the software. Woohoo! Yeah, it's here! I'm using it while I read the instruction manual. (Don't tell anyone I did those in the wrong order.) LOL

Cassandra

[BeanMeScot]

I'm sure it is set wide open 4-20. You should bump up that bottom number to at least 5. Most people don't feel like they get enough air at less than that (I had to bump mine up to 5.5 to get enough air).

While you are playing with it, lay down with it for a few minutes and see how it feels. If you are getting enough air, if it is leaking, etc. It is also a good idea to sit and watch TV or read with it while you are awake, just to get used to it. It will help you to be able to sleep with it.

An APAP works best within a narrow range. If you had a sleep study, you would want to set the bottom number no less than 2cm away from your titrated pressure. Since you don't have a titrated pressure, the machine will have to help you find it so having it wide open is ok, for now. Once you check your numbers tomorrow, report them here and we will help you interpret them.

[Cassandra]

I had a good first night!

Yesterday, I wore the machine for about an hour while reading and surfing. I think I was lucky in choosing a good first mask because I found it very comfortable. I hardly knew it was there.

Then, last night, I got hubby (John) to set it all up by the bed for me with the humidifier and everything. I'm not as detail oriented about reading the instructions. (More likely to put it together how it looks like it goes.) I didn't want to miss something and he is OCD about those things.

I went to bed at 11:30 with a book. But it was too weird to read with a hose in the middle of my face. I wasn't really in the mood anyway. As usual, it took me a while to fall asleep. But it was just midnight (instead of two or three) the last time I looked at the clock. I watched the display on the APAP machine for a little while (fun!) I fell asleep on my side. I woke up from a very vivid and unpleasant dream about 5:30 something this morning. I was laying on my back.

I felt very awake! There was no sensation of bricks on my chest. I had to get up to go potty, so I took the mask off. I didn't bother putting it back on when I went back to bed because I was too lazy to check if there was still any water in it. When JF woke up the first time (he likes to snooze) I asked him how he slept and he said, "I don't remember." I take that as a good sign that I wasn't keeping him awake all night thrashing around and getting up out of the bed every couple of hours.

I still feel much better than usual this early in the morning... well, it's nine by now. I checked my smart code. My AHI is only 5 which puts me barely in the mild range. I am pretty sure it is "position" related. Like if I was averaging five per hour, I bet I had almost none while on my side and almost all of them when I was on my back. But the data doesn't go into that. My 95% number was 7. It's hard to believe the machine can make such a big difference to such a small problem, but I will take what I can get!

The machine didn't bother me at all. I never heard it. The mask didn't bother me much. When I first went to bed, I fiddled with it a little to get it right. Then, when I woke up this morning (from the dream) the hose was stuck between the bed and the wall. I don't have a headboard. It wasn't WEDGED in, but I couldn't move my head until I pulled it out. Other than that, it was the best night's sleep I have had in a long time. I hope I continue to have such good results with it.

Cassandra

Here is the info from my smartcode:
95% .......... 7
90% .......... 6.5
AHI .......... 5
Pressure plateau time ......... 0%
High leak flow time ............ 1%
NRI ............................ .25%
EPI ............................ 0
While breathing hours last day ...... 6.3

[BeanMeScot]

That is a very good first night! The AHI of 5 means that even with the APAP, you still had some apneas or hypopneas (about 5 per hour). It doesn't mean that you don't have apnea. It means that the machine was able to correct it to only 5. Ideally, you want to get the AHI below 5 to feel your best. So getting it to 5 on the first night is very good. Your AHI tends to get somewhat lower over time even without making changes to the machine. It's like your body gets used to the pressure and such and reacts more positvely to it. I would leave everything the way it is for a week or so and see how the results are over that time. With a 90% pressure of 6.5, you won't have much need to change the pressure settings on the machine.

[Cassandra]

The AHI of 5 means that even with the APAP, you still had some apneas or hypopneas (about 5 per hour). It doesn't mean that you don't have apnea. It means that the machine was able to correct it to only 5.

I am glad I have you all here to tell me things like that!

[whatrdreamsmadeof]

Ahhh, Cassandra, a girl after my own heart, beating myself up seems to be my favorite pastime! Just to let you know I have always been a tummy sleeper and still I it took 50 years to find out I have severe sleep apena and RLS. What I wouldn't give to have known this years ago and avoided lots of health issues that will plague me the rest of my life. But boy am I greatful I finally can enjoy the rest of my life! We never stop learning here thanks to the great folks that address everything they experience even the OT things even those of us less tekkie come up with a goodie every now and then, so welcome aboard and enjoy the benefits of gooooooooood breathe in and out!
Ellen

[BeanMeScot]

The AHI of 5 means that even with the APAP, you still had some apneas or hypopneas (about 5 per hour). It doesn't mean that you don't have apnea. It means that the machine was able to correct it to only 5.

I am glad I have you all here to tell me things like that!

It lets you know that you and the doctor were right. You do have sleep apnea. If you didn't have the machine, your AHI would have been higher than 5. We just don't know what it would have been. As I said, I suspect it would be in the severe range just because of the number of times you were getting up to go to the bathroom. There seems to be a strong correlation between the two.

Anyway, you are on your way to feeling better. Be warned that you might not feel as well in the coming nights. A lot of times people will get one night where they feel so much better the next day, it is unbelieveable. Then they spend the next few months trying to get that same feeling back. Usually after that first magnificent feeling, it is a slower path to feeling better. You haven't slept well for years so it takes time to pay some of that sleep debt back. But if you can stick with CPAP and get your AHI and leaks controlled, I guarantee you will feel better!

[Cassandra]

In four nights of use, I am already getting to the point where I'd rather not be in a position to have to sleep without the machine.

Aside from that ... weird incident with the pressure ramping up while I'm awake... the machine has worked great while I am asleep. I don't mean to paint a picture of perfect bliss. There have been minor issues. But, I rather like to look at the overall progress. And minor issues will be overcome, so no point in dwelling on them, right?

Like.. Oh, like I have to adjust my head strap a time or two to relieve the pressure on my nostrils.
And it's almost funny to me that I have been getting this tension headache while wearing the mask. Certain muscles in my face and head tense up in response to wearing the mask--almost as if they are trying to hold it in place. I have to laugh at myself because I go through this whole routine of relaxing every muscle in my head, then adjusting the mask so it is more comfortable. I completely expect to overcome this with practice.

I've ferniggled (my grandmother's word) with the settings a little and have it set on 5 to 10. My AHI is still in the neighborhood of 5.

But the experience of waking up and feeling like I have actually gotten some sleep is something I have long since forgotten, and I really like it!

It already causes me some anxiety to think that I might be without it (upcoming hurricane season, for example.)...

Cassandra

[Muse-Inc]

...might be without it (upcoming hurricane season, for example.)...

If you or your friends have an RV, you might be able to plug in to the battery and sleep. I've even considered sleeping in my car and thought about how to keep the unit level (usually have to buy a special power cable for RVs, cars, etc.). There are batteries for these units that you might investigate. Might check with your Civil Defense Authorities and see if any nearby shelters have made arrangement for people using CPAPs.

Glad to hear it's going well, bumps and all

PS If you haven't investigated getting a power outage alarm, do. I live on in an electrically active area with occasional outages, I have one and it works like a charm to wake me up so I remove the mask and getup. You likely qualify for Emergency Restoration with your electric power utility; this means that they will try to restore your power before others without this classification. I really need to get signed up for this...just can't remember all the stuff I need to do .

[Cassandra]

Good idea, Muse. I'm going to make a note to myself to start calling around Monday to see what I can find out.