New to board...need help!

[reefgal]

Hi, my name is Sandy and I'm new to your board. My brother told me about it. My father, brother and I are all on CPAP therapy.

Help! I've been on CPAP therapy for over five years. I just recently discovered (thanks to a device called a Fit band from BioMedia) that I haven't been sleeping. I had been using nasal pillows, but was breathing through my mouth...so...no therapy.

I went to a sleep clinic and had a new study done six weeks ago. Not only did I wake up 19 times per hour because I stop breathing (for up to one minute) I experience 183 limb movements per hour (mostly in my legs).

The doctor set me up with a new CPAP machine, a new pressure setting (8) and a full-face mask. I'm not having any problem adjusting to the new pressure, my old pressure was 6, or the full-face mask...however, according to my Fit band, I slept 5 hours out of nine last night and slept no longer than 45 minutes at a stretch. Even though I am on medication for restless leg syndrome, I still experience constant limb movements all night. The night before last, I slept for less than three hours. My best night, I was awake 16 times, but did manage to sleep for 2 1/2 hours straight...A new record for me!

I'm extremely frustrated and don't know what to do. I expected an improvement after switching to a full-face mask and a higher pressure. So far, I haven't really seen much improvement. I have had a couple of nights where I sleep for two hours at a stetch, but I'm still waking 16-24 times per night.

I read the instructions on adjusting the pressure on the machine....thanks! I am going to try adjusting the pressure a bit and see if it helps. I bumped it up from 8.0 to 8.4. Any comments or suggestions would be welcome.

[PaulaO2]

Restless Leg Syndrome (RLS) and Periodic Limb Movement Disorder (PLMD) are two different things. RLS is a daytime thing and PLMD is a night time thing. A person can have one and not the other or be lucky enough to have both. PLMD is almost always caused by your brain trying to wake you up.

Which Resmed do you have? If it is the newer, silver S9, the name will be by the on/off button. EPR is a comfort feature and not the name of the device.

I looked up whatever the Fit band is. I don't think you should be using it as a way to tell whether you are sleeping or not. It goes on your arm, not your face (recording breaths), your chest (recording whether you are breathing or struggling to breathe), or your head (to monitor REM sleep).

There are two things that you as a CPAP user need to watch in terms of therapy treatment.

1 - your AHI. The AHI is the number of Apneas plus the number of Hypopneas divided by the number of hours slept. You want that number to be less than 5. This is something that doohickey can't tell you. If you have a data capable machine, such as the S9 Elite or the S9 Autoset, you can view the data that is on the card. If you have the S9 Escape or the Escape Auto, take it back and demand a data capable machine. The data will tell you how many times you stopped breathing (apnea), had shallow breathing (hypopnea), and some other stuff.

2 - how you are feeling. Do you feel rested? Are you sleepy during the day? Those are the important factors and probably more important than the AHI.

[reefgal]

AHI and AI events per hour: When I was using my old nasal pillows and chin strap, I was reading 2.4/2.2 - 4.4/3.4. On September 7th, I got a full-face mask. Since then the readings have shot up to 7.3/4 - 20.1/16.6

It appears my events have increased since I got the new mask...huh!?

Leak: Using my old nasal pillows and chin strap I was getting 10.8/4.8/0.0 - 75.6/10.8/0.0. Using the new mask, it ranges from 10.8/3.6/0.0 - 164.4/21.6/3.6.

What does this mean? It looks like I was doing better with my old mask and chin strap. However, I found the chinstrap uncomfortable and my husband says I was constantly trying to open my mouth.

I have all the data, but I don't know how to interpret it. Can anyone give me some guidance on which numbers I should be looking at and how to improve my therapy?

[reefgal]

I have the S9 that is data capable. I just installed the ResScan software and am looking at the data. I am very confused. When I was using my old nasal pillows and chin strap, my AHI/AI ranged from .8/.8 - 4.4/3.4. Since I got my full-face mask, my AHI/AI is from 8.2/4.9 - 20.1/16.6.

It seems to me that the full-face mask is not working, correct?

As for how I feel...I feel like a zombie. I can fall asleep sitting quietly for move than five minutes. My short-term memory is terrible.

[reefgal]

As for the BodyMedia Fit band, you are correct in that it does not help me monitor my sleep apnea. However, if not for this band, I would not have been aware of how bad my apnea was and that it was not under control at all. The Fit band turned out to be the best investment in my health that I have ever made. Now, I have to resolve the issue of my sleep apnea and PLMD and RLS (I have both).

I am considering investing in an oxygen sensor as well. I really need to get this sleep apnea under control. I am a chronic pain patient. Lack of sleep translates directly to increased pain for me. Also, the stress of feeling like I was losing my mind, extremely poor short-term memory (which I have never had before) was also contributing to increased pain.

I apprecieate your assistance. Can you tell me what my AHI/AI numbers are telling you?

[SuperSleeper]

Don't have much time to answer all the questions, but a quick point: Full face masks are notorious for leaking and will not be as effective in lowering your AHI levels as nasal masks or a nasal pillows system.

I'd only use a Full face mask if you absolutely have to and have no choice.


EDIT: also, I merged the two threads you created so folks can see the other issues you're having and respond appropriately with all the information. Stay tuned, I'm sure others will be along to help out with some replies...

[trish6hundred]

Hi reefgal, First, WELCOME! to the forum.! I don't know the answers to your questions but hang in there, someone will be able to help you with more suggestions, best of luck with your CPAP therapy.

[reefgal]

Anyone have a suggestion for a chin strap that does not cause one's jaw to hurt or cause a headache? After anaylizing data from ResScan, I realize I was doing much better with my nasal pillows and a chin strap. My AHI numbers were MUCH lower. The chin straps I've tried are wide and go right over the top of my head. The velcro gets caught in my long hair and the pressure gives me a headache. I need a strap that goes around my head or attaches to my nasal pillow mask. Any suggestions? I ordered a Wrist oximeter from eBay. I'm going to monitor my AHI number and see if I can tweek the pressure on my machine.

[PollCat]

Respironics makes the Optilife mask with nasal pillows/cushions that has a built-in chin strap - though they call it a support strap. I've used it for a couple years now because I also disliked the chin straps!

[zonk]

Use whatever mask you find fit better and more comfortable
AHI at and below 5 is a good range
The chinstrap should not be tight so it causes you headaches .. just reminder to keep mouth closed as therapy air escaping through the mouth would render the treatment ineffective
Could you post a snapshots of stats and charts