Still feel sleepy during the day.

[Bret L.]

Is anyone else having this problem? When I did my initial sleep test, like others, I slept a while, then tried different masks. When they woke me up, I felt alive. Like I was on a great high. I couldn't stop. I felt better than I ever have.
Many years later and I still haven't felt the same. I do get 6 to 8 hours of sleep a night and use my equipment every night. But I just can't get that feeling again.
I have never had another test done, my last doctor said it wasn't needed with my weight and pressure. Now I don't have good enough insurance to get another one done or buy equipment.
Has anyone figured out why or what did you do to get that feeling again?

[mdbarthe]

It could be a couple of things. I have talked to quite a few people around where I live who are on XPAP therapy and a good many of them have complained of the same thing you are. I wonder if it could be a case of your initial use of the therapy made you feel so much better and was such a stark contrast to your lack of quality sleep and treatment for your apnea; that now, after being on therapy, you have become used to that "good feeling" and it seems mundane.

It could also be that there are other things at work. Stress, preoccupation, etc. Only you might know what those things could be. It could be medications you are on, too. Some of them can be disruptive to your sleep.

I don't believe the CPAP machine you are using allows you to collect data and analyze it. That is a big plus when situations like this come up. You may not be aware that your mask is leaking at night which is not delivering the proper pressure. You may be suffering from apnea and hypopnea episodes that you aren't aware of as well.

If you've gained any weight (I know you mentioned your doctor not being concerned about that but it does make a difference) your pressure may no longer be sufficient to deliver the proper therapy.

There can be a lot of things going on. Without the data and without another sleep study, the answers may not come readily.

[rested gal]

Welcome to the board, Bret.

My first thought was, "I'd get myself an autopap and the software for it, to see what's going on with my treatment."

Then I read...

Now I don't have good enough insurance to get another one done or buy equipment.

So, my next thought is, I'd try these things:

1. I'd get a friend who is willing to stay up all night watch me sleep with my machine and mask, and tell me if he/she sees me opening my mouth to mouth breathe instead of breathing only through my nose. And to watch to see if the mask is getting dislodged even if I don't breathe through my mouth. Be sure to let the friend hear and feel with a hand, the normal leak from the mask's vent, so that's not mistaken as "mask leaking." If "leaks" are a problem, I'd dig into this message board looking for ways to stop those, before I did another thing.

If you're not mouthbreathing (or leaking air out the mouth during sleep while wearing a mask that's not a "Full Face" mask to cover nose and mouth together) but the friend notices leaks from the mask area, I'd rig a hose hanger to minimize having the main air hose tug at the mask when you move:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

I'd also look at the Lab Rat Awards page, to see if there are fixes or modifications others have done to the mask you have:
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104
The mask you listed has many "fixes" on that page. One of the easiest fixes to try, if the nasal pillows are not staying put, is to use a homemade strap of some kind (soft, stretchy material is best) to cradle the pillows upward as if in a sling. Tying the homemade strap up high on the back of your head.

2. If/when leaks are under control, I'd try another cm or two (or 3 or 4) of pressure. I'd go about that methodically, using one more cm of pressure for a whole week, before going up again. If as much as 4 cm's more of pressure didn't make me feel better, I'd put it back at the prescribed pressure.

3. I'd keep an eye out for a Craig's list in my area, hoping to see a Respironics or ResMed autopap for sale.

4. I'd ask everyone I ran into in town, "Do you know anyone who uses, or used to use, a "CPAP" (see-pap) machine for sleep apnea?" You may find several people who have machines stuck away in a closet who would give you the machine. If you're lucky, you might come across an autopap, or at least a CPAP that records more data than just the "hours of use" the basic machine you were given. With more data from a machine, you might be able to get a better idea about how your treatment is going.

5. Even with your old machine, ask your doctor to order an overnight recording pulse oximetry test at home. Most home health care places will do that free one time, if the doctor asks them to. Might be helpful to get a look at whether your O2 levels are staying up all right (90% or above) while using your cpap.

Good luck!

[Guest]

I wonder if it could be a case of your initial use of the therapy made you feel so much better and was such a stark contrast to your lack of quality sleep and treatment for your apnea; that now, after being on therapy, you have become used to that "good feeling" and it seems mundane.
It very well could be since I've been been using CPAP for so long.

It could also be that there are other things at work. Stress, preoccupation, etc. Only you might know what those things could be. It could be medications you are on, too. Some of them can be disruptive to your sleep.

Well I know stress isn't an issue anymore, and when I hit the bed and put on my mask, I'm out like a light. I don't take any meds.

I don't believe the CPAP machine you are using allows you to collect data and analyze it.
I wished I had been able to get the machine that records but it didn't happen.

If you've gained any weight (I know you mentioned your doctor not being concerned about that but it does make a difference) your pressure may no longer be sufficient to deliver the proper therapy.
Kinda what I was thinking.

[Bret L.]

Thank you for the Welcome Rested Gal.

Yes I have the plain CPAP machine that doesn't record anything. I asked last year or so when I was elegable

On the hose, I have it curled above my head on my pillow so it shouldn't pull but it might. I have to have the mask strapped tight to keep it from sliding off my head and when I move I don't feel the hose pull at all. Plus I try to keep it tight so that my mask doesn't leak.

I have to use a strap to keep my mouth closed or it opens and I end up with MAJOR cotton mouth.
I keep it tight also but it doesn't always work. I have a gottee so I can't tape my mouth, plus I don't think I could handle it.

I don't know any one around that has apnea, so I don't think I can find a machine that records. I didn't even know about this forum till I stumbled upon it when I bought a new strap from cpap.com.

Now you mentioned changing the initial pressure on the machine, you can do that? My DME told me I'd have to bring it to them for anything, but of course they bill insurance and I don't have that insurance anymore. Now how would you change it?

I appreciate the websites and all the information, I'll check them out.

Bret

[sadali]

Hi Bret,
I had a similar experience. My c-pap worked to the tune of 3 1/2 hrs of straight sleep for about a month, then, it's back to the same old problem. I brought my machine to my med equip co. today to have it checked out. They said everything was fine with the machine, and if I thought I needed my pressure adjusted, they said they would have to do it, but only after receiving a RX from my doc telling them to do so. I have no med ins either, and have been self pay from the get go. I would imagine your DME would work with you as long as you self pay.


I wish you the best of luck.

[Nekalbustriusis]

I had that fantastic feeling for about three weeks after starting CPAP. The feeling faded away as I started to open my mouth at night and I lost pressure. I tried a chin strap and that didn't work. Finaly I got a full face mask and I started feeling better but never as good as those first three weeks. I asked about it but everyone said that I had just gotten used to feeling good. I didn't believe them and I still don't. I have had a couple of days since when I felt that great feeling again. Once was when I had a technician adjust my machine. I felt great in the morning but felt worse through the day. I know when everything is working right when I see, what I call, "fast hands". I notice that I can do things like wash the dishes and put them away without any fatigue. I have real interest in what I'm doing. I feel happy.
After I felt worse again I began to think that I wasn't getting enough air through my nose. I tried a nasel strip and I started feeling better. Then I used a nasel strip and started to use my nose mask again. I felt much better and got that great feeling back. I also had less trouble with my mouth opening. I had tried taping but it never worked for me. My theory is that I wasn't getting enough air pressure through my nose so I wasn't getting enough pressure in my throat. The right pressure in my throat creates a vacuum in my mouth that keeps it closed. Next I tried a boil and bite anti-snore device to keep my jaw forward and my tongue from falling back. The combination is working well so far. In spite of just getting over a really nasty cold and sinus infection, I feeling pretty good.

[gasp]

. . . On the hose, I have it curled above my head on my pillow so it shouldn't pull but it might. I have to have the mask strapped tight to keep it from sliding off my head and when I move I don't feel the hose pull at all. Plus I try to keep it tight so that my mask doesn't leak. ...

Welcome!

Do you use the nasal pillow? Or do you use the nasal mask attachment for the CL2? I also use the CL2 and find that keeping the headgear medium tight and the nasal pillows lightly touching my nose produce the best results. If I have the nasal pillows lightly touching then the little pillows puff out and provide a great seal. At first I thought one of the lab rat solutions might be necessary, such as using a light strap around my head holding the nasal pillows lightly in place, but instead I've found that by having just the right tightness on the headgear and lighter pressure on the nasal pillows works perfectly.

[Wulfman]

I'd suggest trying to use Polident adhesive denture strips (to seal the lips) if you can't tape or won't switch to a full face mask. Not many people have very good luck with chin straps.


Den

[gasp]

I forgot to address the mouth breathing. I started out using a chin strap and disliked it so much that I learned to keep my mouth closed. I also only sleep on my sides versus my back so it's easier to keep my mouth closed in the side sleeping position. It took up to 6 months if I remember right to not wake myself up during the night from opening my mouth. I've always envied people who sleep so deeply that they won't wake up : )

[rested gal]

Now you mentioned changing the initial pressure on the machine, you can do that? My DME told me I'd have to bring it to them for anything, but of course they bill insurance and I don't have that insurance anymore. Now how would you change it?

http://www.cpap-supply.com/Articles.asp?ID=130

If "Fine Pressure Adjustment" comes up in the menu, don't change that.

If "Auto Off" off is "on", I'd turn that off.

[Bret L.]

Do you use the nasal pillow? Or do you use the nasal mask attachment for the CL2? I also use the CL2 and find that keeping the headgear medium tight and the nasal pillows lightly touching my nose produce the best results. If I have the nasal pillows lightly touching then the little pillows puff out and provide a great seal. At first I thought one of the lab rat solutions might be necessary, such as using a light strap around my head holding the nasal pillows lightly in place, but instead I've found that by having just the right tightness on the headgear and lighter pressure on the nasal pillows works perfectly.

Yes I use both. I really like the nasal pillows, but I get alot of rain out with them. I don't get rain out with the nasal mask, just leaks. If I could find a nasal pillow that didn't have a rainout problem, I'd be a happy person.
Now I like the nasal mask, but the leaks drive me crazy. Without wrapping a strap around my head and it and making it tight, the mask leaks.
Can't win for losing. LOL!!!

[ozij]

I solved the last rainout problems in my Headreset Nasal Seal be using a fleece hose cover for the little tube that conects the mask to the main (fleece covered, heated) hose. That was the final touch necessary.

O.

[Bret L.]

http://www.cpap-supply.com/Articles.asp?ID=130

If "Fine Pressure Adjustment" comes up in the menu, don't change that.

If "Auto Off" off is "on", I'd turn that off.

Thank you, I'll try that this weekend. Thank you for all your help.
I'm going to cover the hose on the mask or nasal pillow too. My hose from the machine to the mask is already covered. I just don't know if this will help with the condensation issue.

[Moby]

I have a theory that when we suffer long term sleep apnoea, we respond to the decreased oxygen in our blood by increasing our red blood cells containing haemoglobin, which carries energy-giving oxygen to the cells. That way our body gets by in an oxygen depleted state, similar to those who live at high altitude, where the oxygen is depleted because the atmosphere is thin.

Our first few days on the machine then provide us with above-normal amounts of oxygenated haemoglobin, which our cells gobble up andas a result we feel super-energised, like top athletes ... which is why top athletes train at altitude, or illegally increase their haemoglobin by various other means (EPO or storing and reinfusing their own red blood cells). Huge energy burst, and my fingernails never looked a more beautiful rosy pink! (from the surfeit of fully oxygenated red blood cells)

The number of red blood cells in our bodies returns very quickly to normal once the oxygen is getting to the cells at the normal rate, so unless we go trecking at altitude we will never get that lovely feeling again...

PS I ran this idea by a doc who thought it feasible particularly in the light of my own haemoglobin readings pre and post treating the apnoea.